“People will forget what you said, people will forget what you did, but people will never forget how you made them feel” 

This isn’t a birth story. I’ve written one of those way back when. It’s not even about the moment we found out, that the paediatrician that checked Oscar over, suspected he had Down Syndrome. I’ve talked about the language she used. The fact that she said she was sorry with a crestfallen expression. I’ve talked about how it felt like this news, was in her mind, the worst thing that could have possibly happened to us. But this isn’t about that. This is about recognising, that in spite of all of the above, there were some really significant people who had a huge impact on our birth experience and after care, that at the time, I don’t think I gave enough credit too. People that perhaps some might argue, were “just doing their job” but they’re people who in my mind, went that extra mile for me.

My midwives.

I talk about them because I think it’s so important to recognise how poignant a job these guys have. Not only do they have your welfare and your baby’s life in their hands, it’s become apparent to me, having spoken through my blog to so many women who’ve come into contact with good (and bad) midwives, just how influential a position these women and men are in.

Their approach and attitude, can shape the way you feel about your baby, should that baby be given a pre or postnatal diagnosis of Down Syndrome or any other disability for that matter. But on the flip side. To show when things aren’t handled, some might consider, the right way, it’s about recognising some of the shameful experiences couples have had and how they perhaps, could have been prevented.

“He looks funny” She said

“It’s bad news” said another

“You have a 1:38 risk that the baby has Down Syndrome so I’ve booked you in for an amnio” Said the next

“She looks a bit Downsy to me” She remarked

“He doesn’t look Down Syndrome” another commented

“Both myself and the student midwife went out after you gave birth and had a good old cry”

These comments, ashamedly, aren’t made up. When I asked a handful of my readers if they’d mind sharing some of the experiences they’d had with their midwives, amongst the positive stories were these. You’re probably thinking that these comments must have been made 50+ years ago because surely midwives, being in the profession they’re in, in this day and age, would have the foresight to see that it may be deemed inappropriate to say things like that? But alas no. All of these comments have been made within the last decade.

Although we had the issue with the paediatrician, who i’m pretty certain has absolutely no idea there’s a whole blog title dedicated to her faux pas (I should probably mention it one day… “Have you heard of the blog “Dpn’t be Sorry”? Well….”) on the whole our experience leading up to and there after, was good.

It was 6th July 2012 when I went to my routine 40 week check up at my local surgery, with my midwife Marlene. I remember the day well. It was really hot and after my appointment I was looking forward to heading home to my sofa to watch Andy Murray play at Wimbledon. I was relaxed, I felt calm. Although I was looking forward to meeting my little man, I wasn’t too uncomfortable at that point (unlike my two pregnancies that followed) so was more than happy to let nature take its course, feeling assured that everything would be ok. There really was no indication that that day was going to lead me down a very different path to the one I assumed I was on. I had seen Marlene a few times. I remember the first time I saw her, asking if I could come and see her again. A clear indication that in hindsight, I must have had a feeling she was a good person.

This particular day she took my blood pressure, checked my urine and then asked me to get up on the bed for her to check the baby’s heartbeat. She was talking to me the whole time, but then just as she found the heartbeat she stopped. Not unusual, as presumably they have to count the beats per minute and listen carefully for anything untoward but there was something about the length of time she listened, that I sensed might indicate all was not well. Calm as you like she asked me what I was doing that afternoon and when I said nothing in particular, just watching Andy on TV she said she thought it’d be a good idea if I headed up to the local hospital to be monitored. She didn’t seem overly worried and because of this, I wasn’t overly worried either.

Without going into the details… it turns out, we probably should have been a bit worried. By the time I got to the hospital they could tell that Oscar was barely moving and his heart rate was significantly low. I was induced but before I even started labour, his heart rate dropped so dangerously low (60 bmp) that they rushed me in for a C section under General Anaesthetic and the rest as they say, is history.

Marlene, my midwife. The lady I attribute as being one of the first, in a line of people, who not only saved my baby that day but in doing so, saved me.

There was also the midwife, who the night Oscar was born, sounded the alarm. Who saw that Oscar’s heart rate had dropped so low, who knew to push that button. There was the nurse called Sarah who took Oscar from me the morning after he was born. He needed to go to NICU to be put on oxygen and to monitor the holes in his heart… but she reassured me she would personally look after him and told me (over and over again, every time I saw her in fact) that he was beautiful and that he had a special place in her heart. And one of the midwives who I remember best. Michelle. The lady who was on duty later that evening. It was now the middle of the night. Chris, having had no sleep had gone home and they’d given me my own private room, which I couldn’t quite work out was to give me my privacy away from the other mummies on the ward with their newborn babies or because they didn’t quite know what to say or how to deal with me. A lot of the midwives on that shift seemed to be avoiding me or didn’t seem to know what to say. But Michelle was different. I remember late into the night, her coming in to check on me and sitting with me for a while. She’d found me sobbing in to my pillow, wallowing in my own self pity and in the nicest possible way, told me in no uncertain terms to get a grip. We talked that night about her little girl. How she was into gymnastics and how one day she thought she’d be good enough to do it at national level. I knew what she was doing. It was total distraction technique. Let’s talk to the mentalist in the bed about my kid so she forgets that her life has just taken a very different turn. It worked to a point. But more than all that she reassured me that I would indeed love him, despite what I was thinking and feeling at that point and that we would be ok, because honestly? There was no other choice but to be. She was a straight talking, strong woman and although the journey to acceptance was a long one for me, Michelle was probably one of the first people to make me sit up and dry my tears. I didn’t see her again until just a few weeks before I had Alfie. Oscar and I were sat in Costa coffee and she was sat a few tables away with her daughter. She didn’t recognise us at first. But as she went to walk past she stopped and started talking to me about Oscar, saying how gorgeous he was. I asked her if she remembered me and as I started explaining who I was, I saw, she’d recalled. I told her the impact she’d had on me that night and how much it had meant to me that she’d taken time out to talk to me. Judging by the smiles through her tears, I think she was pretty chuffed. I saw her a few weeks later when I had Alfie and she hadn’t changed a bit. I felt some of the other midwives treated me like damaged goods. You know, “That’s that woman whose first baby had Downs” type thing. But not Michelle. I loved that about her. She treated me exactly the same as she had before.

But all too often I hear other peoples stories, where their experiences of midwives have sadly not been ideal. We know it’s not just medical professionals, it’s definitely society as whole, but I truly believe midwives have a responsibility to new parents to educate themselves in what having a baby with Down Syndrome actually means v’s what they think it means in their minds.

So if i had, like I had with the GP’s the other week, just 20 minutes or so in a room with a bunch of midwives. Whether they be trainees finding their feet or those midwives who’ve worked in the profession from a few months up to 40+ years… here’s a few things i’d ask them

I’d ask them to please celebrate the arrival of this baby, as you would do any other. To offer your congratulations and to hold the baby, treating this precious bundle just the same as the next. Don’t just hand these new parents a handful of crumpled leaflets that have been squirrelled away at the back of a drawer… Do research yourself. It only takes a few minutes to find out where the nearest local support group is, so tell them about them for when they feel they might be ready. In those early few days new parents don’t want to know too much medical stuff, so don’t overload them with statistics and health complications. Allow them to find out for themselves as time goes on. While I’m sure having a baby born with Down Syndrome is not that common an occurrence at your hospital and you/the junior doctors mightn’t have ever come across such a “case”, please please PLEASE don’t treat this new baby like an animal in a zoo – Please no groups of such professionals visiting to “spot the markers”. It feels, to a new Mum, just so uncalled for. Knowing how vulnerable I felt lying there in that hospital post birth and knowing how much focus I put on your positivity (If midwives were positive, then it can’t be all bad right?) I’d ask them to focus on the individuality of each baby and disregard any generalisations about the diagnosis they’ve been given. But above all, If I could ask one thing of them, it’s that you smile at us. For nobody’s died right?

I appreciate that it’s protocol for the Doctors to be delivering the suspected DS diagnosis and it’s not the job of the midwife, but how that midwife acts around a new mum, really is so so important. At the end of my talk last week, I asked the trainee GP’s if they had any questions for me. There was a pause while they thought, then slowly a tentative hand was raised by a lady sat in the from row. She asked

“If you were so unhappy with the way Oscar’s diagnosis was delivered, can I ask what you would have wanted that paediatrician to have said please”

I’m pretty sure I garbled something along the lines of the below. Probably nowhere near as together as this hopefully comes across but I think they got the general gist. If i’d had thetime to really think about it, (for I truly believe it’s something that needs to be thought long and hard about), I think I would have replied with the following…

“I’d ask that first you say congratulations and take the time to really look at the baby in my arms. I’d ask that you comment on how beautiful our baby is remembering that we made him or her. I’d ask that you say that you have some news to share with us, that perhaps might not have been the news we’d been expecting but that all will be ok. I’d ask that when you say that you suspect our baby has Down Syndrome, that you don’t look as though the world has ended. Give us hope. Say that you will help us with any information we might need and link us to the right support. But finally, over and above everything else, tell us that all our baby really needs right now, is our love… That nothing else, in that moment, matters more than that”

Oh and one last thing to ask that Doctor or Midwife… When the lady you’re looking after, goes on to have another baby after they’ve had one born with Down Syndrome. Don’t make it into a big “thing”. Don’t assume everyone is going to want the screening or the tests. Every woman is an individual and every one of them will make that choice for themselves.

OXO Tot Review

Some of you will know that we use Oxo Tot’s Twist Top Water Bottle for Oscar’s drinks and can’t speak highly enough of the company. So we were thrilled when they asked us if we’d like to try out some of their newer products.

First off was the Oxo Tot Perch Grey Booster Seat with Straps. To be honest with you, we’ve used booster seats in the past with my three and invariably we’ve found that throughout the duration of the meal, they’ve slumped right down and they haven’t given them the support they’ve needed. So I was pleasantly surprised to find that the Perch Booster Seat with it’s 3 point harness and 2 chair straps to keep the seat firmly in place, was a huge success. We tried Flo in it first, as she definitely needs to be strapped in at just 21 months old and she loved it. Being the youngest of three, she’s for the most part confined to her high chair so this seat gave her a new found independence, all the while keeping her safe. The seat is recommended for little ones 15 months + and is suitable for children up to 33lbs (15kg). Alfie (aged 3) was able to sit on it too but without the straps. Hevwas thrilled to sit in “his big boys chair” but was able to reach the table without needing to kneel up the entire lunchtime. It has a fab little backrest and the seat itself is soft cushioned so I have no doubt any little person would be happy “perched” (I went there) on this.

I found the straps easy to adjust, which was quite the relief, as I’m probably THE least technical person when it comes to new gadgets/kit. There’s also excess strap storage under the cushion which is great, as I can only presume it could be fitted to most size chairs. The fact that it’s extremely lightweight and compact in size, means it’ll travel well and could be brought with, if you visited a restaurant and didn’t want to risk using their manky old highchairs (I’m sure it’s not the case everywhere… but why are highchairs in restaurants so gross?).

Oh and I totally googled other reviews to see what other people thought (as you do) and on Amazon it got nothing but 5 Star reviews. Twinned with the fact that the product looks really cool and wouldn’t look out of place in a stylish kitchen* (if I actually had one*) I’d say most Mums would definitely Big up the Booster!

Next was the Oxo Tot Roll Up Bib in grey (6 months +). Being Machine Washable (Yes you did read that right… MACHINE WASHABLE PEPS!!!) it was winning in my eyes from the get go. Comfortable to wear and wipe clean (seriously, they can’t actually go wrong), I was really impressed with this bib. All to often bibs are the wrong type of material and last a total of 5 minutes or are just really tacky looking and stain. The fact that it rolls up for storage and doesn’t lose it’s shape is brilliant so a definite must for all mucky/dribbly toddlers for sure (see photo of Flo drooling for Great Britain)

Finally, the ever so handy Oxo Tot 2-in-1 Wipes Dispenser with Nappy Pouch (Also known as a diaper to anyone over the pond). How brilliant? It holds up to 5 nappies at a time so you’re never gonna be caught short and it keeps up to 20 wipes moist. It has a handy strap to hang on the buggy or simply to use as a carry handle so ultimately means no big old bulky baby changing bag #winning

So in a nutshell, Oxo Tot are still our favs. Highly recommended to anyone wanting stylish and cool mixed with practical and handy. Products are obviously available on a number of sites but here’s the link to Oxo Tot should you want to take a look. Thanks for reading

https://www.oxouk.com/products/baby-toddler/the-grey-collection

“Life may not be the party we hoped for, but while we’re here we should Dance”

They say that when you have a child, you become their biggest and fiercest protector. They also say the hardest part of being a parent, is watching your child go through something really tough and not being able to fix it. I think “they”, whoever they might have been, had a point.

This time last year, if Chris or I had been at a party with Oscar, if I’m honest with you, we would have been on high alert. We’d mostly be worrying about him making a break for it. If there was a chance Oscar could get out, invariably he would. We’d always do a check of all exits to make sure there hadn’t been any doors left open, or keys left in the locks. We’d check gardens for holes in the fences because if Oscar wanted to, he’d find a way of escaping somewhere. We’d also have been watching him the whole time because he’d have a habit of trashing other people’s houses. Not in a malicious way… just because it was fun. Dirty laundry baskets would be thrown downstairs with the entire contents of the basket on the hallway floor, plants would have been depotted leaving a trail of soil behind him… in fact wherever he went he’d often leave a trail of destruction. And then of course there was the biting. It had started when he was two, stopped for a bit, then started for a again for a bit. We knew that it was more than likely down to his frustrations in communication, so a year ago Chris and I would have shadowed him the whole time at a party, just incase we needed to step in. It was exhausting, draining and we felt like we never spent any time talking to anyone else at these gatherings. We felt rude continuously saying, “Excuse me, I’ve just got to check on Oz” but it had to be done because more than anything we didn’t want to be those parents that just stood there, unphased by what their child was getting up to.
So last weekend, when we’d taken Oz to two parties, both Chris and I commented that he’s come a long way in a year. We didn’t feel like we needed to watch him the whole time. He didn’t destroy houses. He tried to play with the other kids. He was happy. He was engaged and he was no trouble at all. (Ok he MAY have escaped through the side gate, but we DID get him back unscathed… Oh and Flo MAY have followed him too but for the most part, he’s pretty good these days)
So why if he is so much better than a year a go, did I go to bed after the first party, feeling just ever so slightly deflated? I think I’ve come to realise it’s the “party” thing. I’ve heard other parents of kids with additional needs mention it before (and I’m not for a second speaking on behalf of every parent here as I know that there’s a lot of kids with additional needs who do brilliantly, who have lots of friends and wouldn’t struggle at all socially) but I think this weekend highlighted for me that sometimes, in a party/play situation, Oscar really does struggle sometimes.
Take for instance this first party. All the boys were charging up and down the garden and hiding behind the shed. Oscar was joining in, just about able to keep up, but as I watched and saw that his little brother Alfie was seemingly being the ring leader amongst it all at one point, charging ahead, shouting instructions to all the other kids, engaging in conversation with all of them… I looked and realised that Oscar was silent. He was trying to engage. He was trying to get their attention. But I guess to the other 4 and 5 year old little boys, Oscar’s idiosyncrasies (like the way he stands really close to you to get your attention or hits you on the back in a playful way as he runs past so you’ll look at him) to them, were just a bit odd. I watched as Oscar got a little too close to one of the boys and ended up bumping into him. Then I watched as this little boy turned around, looked him straight in the eye and said  “I don’t want to play with you” and ran off.
A year a go Oscar wouldn’t have given this a second thought and would have more than likely gone after him anyway. But this particular day I watched as Oscar stood there, his face dropped, his whole demeanour appearing to change as he shrunk just a couple of inches. He had understood every word of “I don’t want to play with you”. He’d taken it all in and it had hurt.
I watched as Chris, aware of what was happening too, headed straight over to Oscar and instead of making it into a big issue, encouraged Oscar to run with him and to catch up with the rest of the group which obviously immediately lifted Oscar’s mood. He had a great time after that, and the little boys comment was probably the furthest thing from his mind as he enjoyed the rest of the party. But it stayed with me.
Chris and I talked that night about the fact that we’re really aware of how it is for Oscar in those situations sometimes. How other kids can be. That it must be really confusing to a 4 or 5 year old child whose trying to fathom out why Oscar acts the way he does and why he can’t always answer them when spoken too. It must be just as frustrating to them as it is to Oscar I suppose.
But sometimes I really wish that little kids weren’t so horrible.
At another party the other day, a little girl (whose exactly the same age as him) asked me how old Oscar was. We’d just had a brief conversation about the fact that Oscar could only say a few words at the moment but that hopefully someday he’d be able to talk like her and I. It had come up because Oscar had bumped into her (yep this kid is clumsy) and he hadn’t said sorry. She had come to me to tell me what had happened and that he hadn’t apologised and that’s when I explained that it was an accident, that he definitely would have been sorry, just that he couldn’t actually say the word sorry yet (BTW he can totally sign sorry but more than likely decided not too knowing him). She’d taken it all onboard and that was when she asked his age.
 “He’s 4” I said. She looked at me puzzled.
“Yes but he’s only just 4 because i’m nearly 5” She said (because in her mind I guess that if he were nearly 5 and her age, OF COURSE he’d be able to talk)
“No” I explained, “He’s 4 at the moment but nearly 5 just like you”
And with that, thinking about it for a second or two, off she went.
As a parent it’s hard to watch. The kids not having the tolerance or patience with him I mean. Don’t get me wrong I totally totally get it, but it’s still hard. He tries so hard to engage and can in so many ways… it’s just that the words aren’t there yet and to a 4 or 5 year old, that’s just weird right?.
So as a parent to the child that can’t fight back, when do you step in and say something?
I’m the parent in the park, that’s always standing right next to the play equipment where my kids are playing because they’re either all too young to be left alone or in Oscar’s case, to vulnerable to be on his own without support. I’m definitely not the parent sat on the park bench outside the children’s play area, out of eye shot, chilling out with my coffee and talking to a friend. So I hear everything. I hear how kids are with one another. And I know for a fact that it’s not only the likes of children like Oscar who are told they don’t want to be played with. Kids are blatant. They say it how it is. They talk about who their friends are and who aren’t. Who there BEST friends are, is classic at this age. The sad thing is, this isn’t a new thing because I remember as a child, doing exactly the same thing. I seem to remember being one of those kids too.
But with all that in mind, I’m also the parent in the park that will step in. Whether the child is Oscar or not. If another child is being horrible and their parents aren’t around, I’ll call them up on it. Because well they need to be told right?
Interestingly the second party the next day was different for me. They had a children’s entertainer who was fabulous but fairly loud and for the first part of the party a dubious Oscar stayed close to me. But ever so slowly, as his confidence grew we edged closer and closer to the entertainer and where all the other kids were and although it took him a while, he got involved in the end.
And when I watched really closely (because now in a party situation, I can actually sit and have a chat with other mums because he doesn’t need me as much as he once did), I watched as he danced with some of the other kids, played with a balloon with another little boy and at the end, when the children’s entertainer asked all the kids to huddle together for a photograph with the birthday boy, I watched as Oscar put his arm round a little girl and hold the hand of the boy next to him. And both the girl next to him and the boy didn’t think anything of it and gave him big smiles. As we left the party, it dawned on me that as long as he’s having fun and feeling involved that’s all that matters. And that afternoon at the party, it reaffirmed the fact that sometimes communication isn’t about what you can say. It taught me he can engage without saying anything at all and despite his efforts to say more (and we’re getting more sounds all the time), perhaps for now Oscar doesn’t need words.
One of my biggest worries for Oscar, aside from the lack of speech, is worrying he won’t make friends. Worrying he won’t fit in. People talk about how society is changing and how we’re all so much more accepting, especially the younger generation but sometimes i’m not convinced. Oscar goes back to school tomorrow after a 2 week break for Easter and this evening I busied myself, sorting out his PE kit and packing his bag. His communication book was in there, which is the book that goes back and forth between myself and his TA. It covers anything that each of us might need to know and is really lovely for Chris and I to hear how he’s gotten on each day but as I reached for it, something fell out the bottom of it. It was a note and a drawing from a child in Oscar’s class. I can’t say who it was (as it’d be wrong of me to disclose names) but this little boy had drawn a picture for Oscar and on the back had written Oscar with a love heart and his name. It made me smile. Not because it was a  big deal. But sometimes these little things in their simplicity, are sent to us at exactly the right time we need them.

Dreams won’t work unless you do

Early this morning, I was approached by Channel 5 News to go up to their studio in London to talk about whether people with learning disabilities should be allowed to earn less than the minimum wage. The reason they asked, was because today an article has been published in The Spectator Magazine, written by a lady called Rosa Monckton who has a daughter, named Domenica who, like Oscar, has Down Syndrome.

Last year Rosa set up the charity – Team Domenica. The purpose of the charity is to get young adults with learning disabilities into employment because she found, as have so many other parents, that there was nothing for her child to do to once she had left college. The charity has 21 trainees and it runs a year’s course in supported employment, in partnership with Brighton City College. They also have a training café which is open to the public, where young men and women can hone their practical and social skills. They have an on-site business, where they weigh and package spices, stick on labels and parcel up the goods. Their kitchen is also a mini-business: they select items they would like to see sold in the café, make the shopping list, do the shopping, cook, price up and deliver to the café. But Rosa is asking, after they’ve completed their course, what happens next?

The journalist wanted to find out whether I would be available to come and talk about this topic on their show live this evening, and whether it is something I could see the benefits of as a mother of a child with Down’s Syndrome, or whether I thought allowing young adults like Domenica to be paid less than minimum wage, is an exploitative proposal.
Sadly I was unable to do so, as I had a prior commitment but the subject they raised got me thinking – How DID I feel about this?
If i’m completely honest with you, my immediate reaction before I’d read Rosa’s article, was that I felt that if Oscar was in work in the future and he was being paid less than someone doing exactly the same job as he, then I think i’d find that hard to swallow. Was it not just showing the world that people with Down Syndrome or other learning difficulties are of less worth than the next person? And that’s surely going against everything we fight for as a parent in this “modern” world, that everyone of us should be equal.
I was shocked to hear though that of approximately 1.4 million people in the UK that have a learning disability, 1.3 million of them are unemployed. Now i’m under no disillusion that some of those, for various reasons won’t be able to work, but i’m imagining that a large percentage of that statistic is due to the fact that there just aren’t the opportunities for them to go out to work sadly. The October 2016 Department of Work and Pensions Green Paper, Improving Lives, states: ‘The evidence is clear that work and health are linked.’ It says that there are 1.5 million people in receipt of the Employment and Support Allowance benefit, yet acknowledges that there is little practical support to help them into work. It accepts that ‘the longer a person is out of work, the more their health and well being is likely to deteriorate… so every day matters’. With that in mind, why can’t we do more for young adults like Domenica? Why can’t we, when so many like her want nothing more to work, can’t we accommodate?
Rosa says “Pay is the really thorny issue. The single thing that makes it most difficult to get people with learning disabilities into work is the ratcheting up of the minimum wage, which from 1 April goes up to £7.05 per hour if you are aged between 21 and 24, and £7.50 if you are older. On the whole, employers are not charities, and it is difficult for them to employ people if their output amounts to a loss. Most of our graduates will manage only eight to 15 hours a week. Yet even to raise the subject of exempting disabled workers from the minimum wage, letting employers pay them less, is to be considered brutish and inhumane”
I get that. If I was an employer and I was about to employ someone with a learning difficulty, I wouldn’t want to be seen to pay them less. It’s a perception thing right? Who wants to be seen as the arsehole employer who pays someone with Down Syndrome less than someone who doesn’t have the condition?
A while ago a friend of mine, who manages a business, told me of a young man called Jake that he’d had on a work experience placement in his office for a few days. Jake was in his early 20’s and had Down Syndrome. One of the jobs they’d asked him to do was stuff and seal a bunch of envelopes that needed to go out as a mail shot. My friend told me that although it was fab to have Jake in the office, he had spent most of the time singing One Direction songs at the top of his voice and although the envelopes got stuffed … he was a little apprehensive to tell me they’d been done at a painfully slow rate and perhaps with less precision (a lot were crumpled) than perhaps they would have been if someone else had done it.
I wasn’t in the least bit offended by the tale of Jake. For I know that although so many people with learning difficulties are more than capable of holding down brilliant jobs, there are some, perhaps like Jake who might need that little bit more time and patience spent of them teaching them exactly how an employer might like the job done.
I guess the point is that employers aren’t a charity either and why should they expect less from an employee?
On that note, Rosa also talked about the fact that just over two years ago, Sigmund Freud’s great grandson Lord (David) Freud, then a minister in the DWP, was asked a question on the subject by a Tory councillor, David Scott, who said: ‘I have a number of mentally damaged individuals, who to be quite frank aren’t worth the minimum wage, but want to work… but you can’t find people who are willing to pay the minimum wage. How do you deal with those sorts of cases?’
Freud replied: ‘I know exactly what you mean, where actually as you say they’re not worth the full wage, and I’m going to go and think about that particular issue, whether there is something we can do nationally.’
The backlash was spectacular. Ed Miliband declared ‘The Nasty Party is back’; and various disability charities, such as Mencap, denounced Freud. Esther McVey, a fellow-Tory who was the disability minister in the same department as Freud, said on the BBC Daily Politics programme that ‘Those words will haunt him… he will have to explain himself.’
It’s a tough one. I can see both sides. The employers/companies don’t want to be seen to pay our children less and I understand that they’re not a charity. Why should they expect less for their money? But can people not see that by not allowing people with learning disabilities the chance to get out there in the community and work, it will lead to a group of people being depressed and isolated.
Would it be such a bad thing to pay these people a bit less in some cases, rather than right off a whole corner of society? Could we not work with charities like Rosa’s and give these young adults the opportunities to thrive?
I’m thinking about Oscar now and when it’s his time to head out to work. Would I be happy for him to be paid a bit less than average, in exchange for him being happy, him feeling like he’s achieved and feeling like he has some self worth? I think i’d probably be ok with that. Does that mean that I’m doing him a disservice in allowing that to happen? I don’t think it does. Would I be happy for him to get to the end of his education and feel like that’s it? That there’s nothing more for him? An existence rather than an actual life? Absolutely not.
I’m confident that with people like Rosa in the world, championing our children and giving them further opportunities in life, things will hopefully change. I say this all the time but even just a few years ago, children with Down Syndrome were institutionalised and were all but written off. It’s only been since the late 1970’s that children with Down Syndrome have been deemed “suitable to educate”. With early intervention what it is now, I am also confident they will only go on to do bigger and better things. That’s my hope anyway.
Oh and one final point… I’m pretty sure the likes of Daniel Laurie and Sarah Gordy (the english actor and actress who’ve both stared in “Call the Midwife”), Madeline Stuart (the Australian fashion model), Isabella Springmuhl (the Guatemalan fashion designer), Tim Harris (the American owner of ‘Tims Place”, the restaurant) and Pablo Pineda (the first european man to complete a university degree) all of whom happen to have Down Syndrome, might have something to say about the minimum wage. In fact i’m almost certain that all of these brilliant young men and women earn well over and above it, paving the way for the next generation for sure.

“I am not here to change the world. I am changing the world because I am here”

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There are times that I wonder if perceptions will ever change. Whether the message is getting through. If blogs like mine really make a difference or not. Don’t get me wrong, it restores a little faith to know, that if one or two people every once in a while, look at this blog and page and perhaps don’t feel like having a baby with Down Syndrome would be the worst thing to happen to them… well, then perhaps the message IS getting through… slowly.

I posted earlier this week about the fact that if a woman finds out late into her pregnancy that she is expecting a baby with Down Syndrome, it is actually legal in the UK for her to have a termination up to 40 weeks. Not because this baby won’t live outside the womb. Not because this baby is expected to have little or no quality of life. Simply because they have Down Syndrome.

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I had talked about this previously and it was met for the most part with utter shock and disbelief. Now I’m not kidding myself here. The people that follow my page, are obviously going to be people that want to know more about Down Syndrome. Perhaps they have someone in their lives who happens to have Down Syndrome – a son, daughter, niece, nephew, grandchild, a friend’s child etc. These people are obviously going to be pro Down Syndrome and not haters… you’d have hoped.

But then, there in black and white as I scrolled down to look at the comments under this particular piece, was a few lines from a lady named Sally*. Sally had herself terminated her baby at 12 weeks because she had found out in her first pregnancy that she was carrying a baby who happened to have Down Syndrome. It’s not the first time someone has come forward, openly and honestly telling me, that they chose to terminate. I have in the past commended their bravery. I’m not altogether sure I would be man enough to confess, especially not to a woman who has a child with Down Syndrome herself but when they have, I have always said that I have respected their right to choose. Had I been in their position and we found out Oscar had Down Syndrome prior to being born, I genuinely don’t know how I would have felt. So I’ve respected their wishes and just thanked goodness, that I didn’t have that choice to make.

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But when Sally, the lady who’d come forward to tell me she had aborted her baby because she’d had Down Syndrome, went on to say that she had a 16 year old niece with Down Syndrome, my heart felt heavy. Really, really heavy. She said that Amelia* (her niece) had been ‘riddled with issues’ and that at best they could expect another 10 years before she passed away and even though this lady said she was devastated at the thought of losing her niece, the bottom line I got from her message, was that she didn’t want a child with Down Syndrome for herself.

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She went on to justify her reasons – She said that she couldn’t bear the thought of outliving her child and having to bury them. That she knew she wouldn’t be able to cope with the bullies. And that she’d find it heart breaking that she’d have to tell her daughter that she wouldn’t be able to have a child of her own.

I was puzzled. Did this lady definitively KNOW that her daughter would have health issues? Did she not know now that people with Down Syndrome are living longer, fuller lives and that perhaps her baby could have outlived her? Bullies? Really? I mean I understand the sadness not being able to have child might bring a person… But to terminate them on the basis that they might be sad they couldn’t have a baby? REALLY?

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We had a couple of messages back and forth and I asked her if it had been flagged up that her baby had had major health issues? I made the assumption that this must have been the case. I try desperately hard not to judge and couldn’t even begin to imagine the impact these health issues have had on her or her family but suddenly I was wondering how Amelia’s mother felt in all this. If she had her time again, would she have chosen terminate her now 16 year old daughter because she had been ‘riddled with issues’ or was this just Sally, looking at her niece and thinking, do you know what, I could do without that?

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She didn’t answer my question about whether it had been found that her unborn child had had major health issues. I am suspecting, as she didn’t answer, that there were probably none. She also went on to say that they tried again and now have an ‘amazing healthy child’, which lead me to believe that in making that statement, she probably considers a child with Down Syndrome, unhealthy. She said that it was her decision and she doesn’t for a second regret it. She said that she doesn’t ever tell anyone about any of this and that she was now going to delete the comments. Which she did.

I sat for a while at my laptop, thinking. I couldn’t work out why I felt so sad. It actually wasn’t about the termination. I fully understand that some people think they won’t be able to cope with a child with Down Syndrome. They’re scared and they don’t think they can handle it. I get that. But I think I felt sad mostly because she has someone with DS in her life and yet she still chose to make the decision she did. I think perhaps I felt sad because the very ethos of this page, is that if someone could spend just a few minutes in Oscar’s company, they might be swayed in thinking that actually, Down Syndrome’s not that big a deal and if anything, he’s a pretty cool little guy to be around. And right there, in black and white, she was dispelling that very notion.

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But also the ‘amazing healthy child’ was a statement that didn’t sit right with me. It felt like she was saying that a child with DS couldn’t be either amazing or healthy, which just isn’t true. It felt like she was saying that since having this ‘amazing healthy child’ she’d hit the jackpot and that, for some reason, hurt me.

One of her final messages to me was that once they found out she had tested positive for Down Syndrome, they had decided not to find out how severe it would be. In that very sentence I realised she knew very little about Down Syndrome, for most of us know there is no test that can tell you when a baby’s in the womb how severe a child with DS will be, any more than it can predict if Alfie or Flo will go to Oxford university or become coke addicts with no jobs and end up in prison.

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I told her I was glad she didn’t regret her decision and I wished her all the best. I had nothing more to say.

In The Times newspaper last weekend there was an article written about how parents of disabled children had cost the NHS £70 million over the last 5 years. The reason being was because, had they known of the abnormalities earlier, they would have had abortions. The bulk of the pay-outs were to parents who claimed that antenatal screening failed to warn them of the risk their baby would be born with a disability and therefore they made claims, due to the hospitals negligence. Now I don’t doubt that some of the hospitals were accountable for missing things in the screening or scans. I’m not denying that some of the people claiming have been through huge financial strain because of the extent on these children’s disabilities. But the article talked of parents of children with Down Syndrome and while I understand the initial feelings of needing someone to blame, once that baby’s been born, is there really a need to point the finger? Are the parents THAT cross that things MAY have been missed in the scans and screening that they go to these lengths? To me, it says these parents aren’t happy to have their child in their life. That they see them as a strain, as a burden or that perhaps they’re not wanted after all, and again, that makes me very sad.

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So there are times, like when I read the article in newspaper and I hear from Sally with her 16 year old niece, that I wonder if my job (and many others out there) as an ambassador for our kids, is just too high a mountain to climb. If perceptions will ever really change, or if we’re just fighting a battle that can never really be won. I guess if we asked anyone outright if they wanted to bear a child with Down Syndrome for their life, I’m guessing I’d be met with a resounding no. But people currently in that life? People living with a child of their own, a sibling, a grandchild, a niece, a nephew with Down Syndrome? I’d have hoped they would say that the reality isn’t nearly as bad at all.

Dr Brian Stotko conducted a study (2011) and asked 2,044 parents who have a child with Down Syndrome some fundamental questions. 99% reported they loved their son or daughter and 79% thought their outlook on life was more positive because of their son or daughter with Down Syndrome (this 79% is a strong message that they weren’t just happy but that their life was MORE positive). Amongst siblings ages 12 and older, 97% expressed feelings of pride about their brother or sister. And only 4% of this parents surveyed, regretted having their son or daughter.

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Paul Shane Spear once said “As one person I cannot change the world, but I can change the world of one person”.

With every new parent of a child with Down Syndrome that finds themselves reading this blog or page, whether they find out in pregnancy or post birth, I’m pretty sure Oscar’s doing just that for them and if that’s all his does in his lifetime, well that’s more than I could ever have imagined. And the lady with her niece? I genuinely hope she’s happy.

* Names have been changed to protect identities

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A world without my beautiful little boy?

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We were really keen to not have too much of an age gap between Number One (Sophie) and a second. She seemed to take forever to be conceived and I was worried it may take a similar time frame again for the second (we weren’t getting any younger!). I was in absolute disbelief (in a good way) when Number Two was ready to go after just a few months of trying!

The day after the 14 week scan, which fell on a Thursday, we received a phone call from the Princess Anne Hospital, Southampton, saying that our scan had presented – and I forget the exact wording here – a 1-in-3 chance of the baby having Down’s syndrome. Apparently the sonographer had also seen something that didn’t look quite right with the chin – which in itself didn’t worry her, but with the nuchal translucency neck fold and Liz’s blood results; they felt that it deserved a phone call on a Friday afternoon. The link midwife (for diagnoses of chromosomal abnormalities and the like) wanted to invite us for a scan with fetal medicine on the Monday morning; hence the phone call late on a Friday. We had a brief phone conversation and she was both extremely helpful and informative. She ran through some of our options, which included us doing nothing, but we decided that we should take advantage of being able to see Mr Howe (consultant) in fetal medicine. The scan showed up some cystic hygromas – something that is symptomatic of chromosomal ‘abnormalities’, with this and the other markers, it presented a potential of various aberrations (if you will), not just Down’s syndrome. Both the link midwife and Mr Howe then spent time talking through various options with us – one of these was termination, but it was put forward as an option and, in my mind anyway, not something that was pushed onto us in anyway shape or form. The Non-Invasive Prenatal Screening Test (NIPT) seemed like a really sensible test to take – there was no risk of miscarriage at all and, whatever the result, it would give us perspective, along with a chance to prepare both mentally and physically. I even starting teaching Sophie makaton in preparation of her potentially being able to communicate with her younger brother more easily! So blood was taken there and then and we would have the results back by the end of the week.

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I think we had prepared for a positive test already – we didn’t speak about it overly much that week but everything seemed calm between us and we were still very happy that Number Two was on its way. We had already asked the hospital to phone us as soon as they had the results back and this is what she did on the Thursday (a very quick turnaround I thought) – the test was positive. She spoke to us for a while on the phone, told us what will happen from now on, reassured us that we would have the same midwife throughout the pregnancy and made it clear she was there should we need anything. In fact the community midwife phoned the very next day and paid us weekly visits up until two weeks after the birth. She was absolutely amazing and would often fit us in as extra after a very hectic day. The news certainly didn’t come as a shock to me, and I think Liz handled it extremely well also. I have volunteered and worked with both children and adults with physical and learning disabilities most of adult life and I felt almost blessed and lucky that I was going to be around such humbling company. Company which doesn’t discriminate, judge, give to receive and who can love unconditionally.

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So from that point on we felt in the safest possible hands. There are so many things that I didn’t know about Down’s syndrome – more so the physical side of things – and I think that the hospital were very clever and sensitive about how much, and when, information was delivered to us. We had scans at week 20, 28, 34 and 38 –, and each time they spent up to two hours with us, bringing over a cardiac pediatrician for a second opinion on the heart to identify any potential congenital defects and de-briefing us at the end of each scan. It didn’t seem that they were just doing their job, just fulfilling the Hippocratic oath that they had signed, it seemed as though they really cared and wanted to see the best for us and the forming life; no matter how many chromosomes he had! At the 38-week scan we formulated a plan of being induced at week 39 if nothing had happened before…

We were due in on the Thursday for induction; something I have been told is rather unpleasant for the women involved. Luckily no-one had given baby that memo and labour started in the early hours of Wednesday morning. Sophie was out within four hours from start to finish so we were told that we needed to get into hospital pretty sharpish once the contractions started with Number Two. I phoned the labour-line and they couldn’t have been more helpful – again making us feel that we are in incredibly safe hands. They were expecting (see what I did there) us when we arrived and we were quickly, but calmly, taken to our room. Liz was hooked up to a wireless monitor to check the baby’s heart rate but other than that everything else was like the first time. Jack Denis Miller was born at 7.32am on that morning at the amazing Princess Anne Hospital in Southampton. We were over the moon at a safe and uneventful delivery of our precious little boy.

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For the following two days in hospital we received, what I believed to be, the best possible care. We were given our own room – something that the midwives arranged for us during the birth –, which obviously helped loads. Jack had his heart scan on the first day – we weren’t expecting anything serious as the fetal scans had only showed a potential ventricular septum defect – but still a worry nonetheless. A midwife went with me downstairs to the neonatal ward and made sure that Jack’s every need was catered for. She didn’t stop stroking his face, talking to him and making sure he was comfortable. The bed was at a really awkward angle and, although clearly in an uncomfortable position (I know I was), she didn’t stop holding him. The second thing that bowled me over was when the pediatrician came in the room to tell us the results of the scan – he came bounding in the room clapping has hands together telling us of the good news (completely clear). He was clearly genuinely happy for us.

I managed to watch Sally Phillip’s documentary – ‘A World Without Down’s Syndrome’ – on the Thursday night (I wasn’t allowed to stay on the ward). It was probably best I watched it on my own, as it was heartfelt, emotional, visceral and so soon after the birth! There were many issues in the documentary that I found extremely abhorrent, challenging and, if I am truthful, I basically just didn’t understand. I truly believe that education is the way forward with so many things in life. To take such a backward step and operate basic eugenics seems to be so primitive – maybe people don’t realise the positive impact someone with learning disabilities will have on their (and indeed the world’s) life. If we keep looking for ways to not help other people then I worry what will become of this world we live in.

I found it tough to listen to what medical staff at various hospitals had said to women who had received a diagnosis of Down’s syndrome. Our experience had been a really positive one and I really hoped that this was the norm, however I am not that naive to actually believe this. I – and I know all of you reading this – will live in hope that the NIPT can lead to parents making informed choices, without prejudice or pressure, and in such a way that all the many positives of Down’s syndrome can be told. I know for one I don’t want to live in a world without Down’s syndrome, it would mean being without my beautiful little boy. I am excited to see what the world will bring for him and what he can bring to the world.

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Marvellous Monkey Music

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This is Flo, Oscar’s little sister. I don’t often write about Oscar’s siblings, because I guess the idea behind the blog is about him – a little boy who happens to have Down Syndrome. But today it’s Flo’s turn.

Flo is my third baby. So as I assume is the case in a lot of households, Flo gets carted around from pillar to post following her brothers to various appointments, playdates, preschool and school drop offs and true to form of most 3rd children, has just sort of slotted in. I’m ashamed to say in her little life so far, I haven’t really spent much time with her on her own, so when the opportunity to attend Monkey Music in Oxshott came up, I jumped at the chance to do something for her for a change.

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Now forgive me if I sound slightly* annoying (*very), but being an ex performer myself, I suppose I expect a lot from a music class. I’m not saying I want a West end superstar up there but seriously, someone with a bit of charisma is a must surely? With the boys, i’ve done the rounds of what can only be described as mediocre music classes for kids. Props that have seen better days, dreary songs, where you slowly lose the will to live listening to them week after week, not to mention teachers that have clearly sang about the weather one too many times that term and appear a bit tired themselves. I’ve seen it all. So the first time I walked into a Monkey Music class taught by the lovely Emma, I knew we were on to a winner.

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Emma is bright and engaging AND guess what? She can actually sing. Not just sing but she sings beautifully. The children are captivated by her from start to finish and the general feeling in the room is just lovely.

The class starts off by singing the Hello song and trying to find Monkey. The children think it’s hysterical that Emma hides Monkey behind her back and wanders around the room trying to find him.

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The next song involves us all taking part in a series of actions – Peekaboo, Clapping, Touching your toes. The adults are encouraged to join in so the children can copy and model their behaviour.

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A fab section of the class is the song all about vehicles – a train, a bus, a boat and an aeroplane. The children appearing to love the sound effects of all the different methods of transport. A big hit.

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There is of course the standard musical instrument section. But they’re not just any old grotty shakers, that you might find at the bottom of a playgroup toy box. Oh no, these are all in prestine condition – shakers, bells… we even had drums with a beater this week. Fabulous.

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My favourite part of the class, is one of the final sections – The leaves on the lake. A tribute to the autumnal weather we’ve been having lately, Emma asks the children to sit on the lake and then proceeds to throw leaves up into the air, which then fall onto them as she sings a song. A truly beautiful moment watching all the children trying to catch the leaves as they fall and one that’s so apparent that they all love.

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No music class would be complete without bubbles for the children to pop but Monkey Music take it to another level. Bubbles, sensory lights and a different piece of music each week. Truly wonderful.

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Back when Oscar was Flo’s age, I was really passionate about the fact that I wanted him to experience Music. We were so lucky that he was able to access music as part of his therapy from a young age. I know how powerful music can be in our own lives and in the lives of our children, but why is music so compelling and captivating?  What exactly is it about music that makes it a great way to connect with and help children with special needs? It’s my belief, that music tends to be one of the top motivators for children with special needs. Imagine a child hitting a drum with a mallet. On the surface level most people would just see a child playing a drum, but there is so so much more going on. Hans Christian Anderson once said “Where words fail, music speaks”. For many children like Oscar, words fail them daily. Either they can’t get all their words out or can’t process the words coming in. I always think about how frustrating it must be to have limited speech skills and yet he gets bombarded by speech and words all day long. When we connect with each other and express ourselves through music, it feels more powerful and effective than spoken language. I can’t help but think that this type of therapy and interaction was a huge relief for him and that’s why I wanted Oscar to be able to engage in such a class.

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We were lucky when Oscar was Flo’s age, that we were able to access music therapy but what does music mean to Flo? Whether a child has additional needs or not, the idea behind it is exactly the same. Confidence building, social skills, hand eye co-ordination, interaction and developing speech. Music really is an easy, fun and motivating way to connect and motivate children to develop new skills. Flo loves the interaction she gets with Emma. She loves that Mummy can join in too. And looking at the smile on her face, I’d say Monkey Music is a huge highlight of her week.

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To find out more about Monkey Music Classes in your area – http://www.monkeymusic.co.uk/find-nearest-monkey-music-class.php?area=whole%20uk

To find out more about this particular class, please contact – http://www.monkeymusic.co.uk/area/Leatherhead-Dorking

“Diagnosis is not the end but the beginning of practice”

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“Wow, he doesn’t stop does he? He’s been running around all lunchtime. Superstar.”
The statement was uttered by a slightly out of breath teaching assistant Oscar had apparently been giving the run around that lunchtime. I’ve been picking Oscar up from school every day at 1.20pm, which has meant he’s had his lunch, enjoyed some outside playtime with his peers, then gone home to relax so as to not push him too far, too soon with longer days. On this particular day, Oscar’s actual teaching assistant was away on a Makaton Course so her position was being covered by another member of staff (a lovely lady, I might add). And she was absolutely correct in her statement. I don’t doubt for one second, that at school, in the playground, he does not stop. 
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On my walk up to the school, I could already feel a lump in my throat and my bottom lip starting to wobble but I’d held it in. But on my arrival for pick up that day, her comment, although well-meaning and a positive in her eyes, felt like another blow to my already heavy heart.
 
I’m being dramatic, I know I am, but earlier, sitting in the paediatrician’s office with Oscar, she had suggested that in another year, we might like to do an assessment on Oscar to see if he has “ADD” (Attention Deficit Disorder). I would say it was a shock but she is the third professional in the space of a few months that has uttered these three letters to me. Three letters that every time, seem to cut a little deeper.
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The paediatrician’s office was sparse. Lots of space, a bed, a few chairs, a device for measuring your height and a chair to sit on to measure your weight. As the doctor and I discussed Oscar’s progress and any medical issues that may have arisen in the last 6 months, Oscar jumped up onto the bed, standing on a conveniently placed box to heave himself up. It wasn’t done with any sort of grace or decorum. More like a bull in a china shop. He sat there for a while but then jumped off and started playing with the device to measure your height, clumsily knocking it over as he moved on. He flitted from one chair to another and if I’m completely honest with you all, he wasn’t still for much longer than a few seconds at a time.
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“It’s not something we’d be thinking about yet,” she said, “more so when he’s around 5 or 6 years old. He’s still so young, it could be that it’s an immaturity thing. There’s not that much in this room to keep him occupied. But I’m noticing today, nothing’s really holding his attention. What do you think, Mrs Roberts?”
 
She was right. I knew she was right. He wasn’t sitting still at all and if I was her, I’d totally think he had ADD. And to tell you the truth, it’s been something I’ve been thinking about for a long, long while now. But equally I genuinely had thought, that in the last few months he had calmed down. He seems to be playing with toys at home more than he ever did before. He now enjoys sitting and listening to a story being read to him (he would have never have done that 6 months ago). A while back if he’d been watching television, he’d never actually sit and watch it… he’d be watching but invariably doing some sort of acrobatics off the sofa. And that had definitely stopped. So what I thought truthfully, was that because he’d calmed down considerably, the niggling thought at the back of my mind, might have meant that I was wrong.
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We talked for a while. I told her she wasn’t the first to have said it. His thyroid consultant had asked me much the same thing a month or so ago, when he’d climbed on the bed in her surgery and intermittently played with the curtains. His OT attributes his energy levels to his sensory seeking and says if we can find ways to manage that, then she’s certain he’ll calm down. But who knows who’s right here?
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What I do know, is that day in the paediatrician’s room, my heart hurt again. It didn’t hurt the way it did when I got the potential Down Syndrome diagnosis. That was another level type of pain. But it hurt at the thought of Oscar having yet another diagnosis against his name. I felt cross that this kid has had enough to deal with in the 4 short years he’d been on this planet. He didn’t need another label surely? She reassured me that it may not be the case at all and that it might just be that he’s young and him being a “typical” boy. But she said that we needed to be on top of it, if it turned out he did indeed have ADD from an education/learning point of view. She said before our next appointment (in 6 months’ time), she would ask the school for a report from their perspective. She’d ask how his focus and attention was, how he was learning, how he was getting on generally. But listening to her I realised that the other kids I’ve been around who have DS, are probably not as lively as Oscar. Maybe my fears, however deep routed they were, were about to be confirmed?
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I guess what I’m most gutted about is my reaction. I’m going to be honest. I have always vowed I would be honest on here. But I’m cross with myself because I have done exactly the same as what I did when I found out Oscar had DS. I panicked, imaging all the things that that label meant, without really knowing much about it. I had an image in my mind about what having a child with DS meant and could only think of that. That awful image when the reality, I later found out, is so far removed. But I’m now doing the same thing with ADD. In my head right now, all I can think of, when I think of a child having ADD, is them charging around, out of control and unmanageable. I’m thinking about despairing frazzled parents, trying desperately to control their child but to no avail. I have an image in my mind about ADD, a fear about what the title means, before I’ve even understood it and what it means for Oscar… and for that I’m annoyed at myself. 
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The paediatrician’s words to me as we concluded were, that IF Oscar did have ADD, it could be managed with medication. I of course knew that and did feel some relief that there would be help out there, should he need it. If his focus and attention was better, surely that’d mean his learning would progress more? That could only be a positive. But I felt sad that day, walking to school to pick him up because I realised this could potentially mean, MORE medicine. MORE intervention. MORE challenges, I guess.
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I know that whatever happens, there’s no point worrying about it now. A lot can change in 6 months to a year and it doesn’t sound as though she’s going to be assessing him anytime soon. It doesn’t change anything really, he’s still my gorgeous little boy and if he happens to have ADD too we will tackle it head on, like we always try to do with anything that gets thrown at us. The thing I’ve realised is that life has a habit of throwing us these curveballs from time to time. It doesn’t change Oscar as a person at all. He is loved and that’s all that matters ultimately. But perhaps it changes me again. Despite priding myself on trying to look on the brighter side of life and at the bigger picture (there are worse things to worry about in the world, right?) it feels like another setback, another grey hair or wrinkle (to add to the rest), another dent in my already bruised heart.
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I’ve said it before though but THIS IS LIFE. The life I’ve been given. Regardless, we’re gonna live it in the only way we know how. And just as I take in all the things all the professionals say, worry and mull them over, I must also remember what Oscar’s TA said when I picked him up that day. She said “Superstar” … “He’s a superstar” and she was right about that one. Diagnosis or not, he’s still exactly the same person he was yesterday
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“Everyone wants to escape sometimes”

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I suppose I should commend Oscar for his sense of adventure. And I suppose the fact that he’s determined and independent is a good thing, right? I listen to other parents talk about their children and how they never stray too far from their sides and I wonder why I ended up with three kids, that invariably head off in completely different directions. And although all three of my kids love to explore, there are two of them that get a certain distance away, panic they’re too far away from their mummy and scrurry back but a certain someone else, couldn’t care less how far they wander. In fact they’re far too busy having a lovely time, keeping me on my toes… and yes, you’ve guessed it, that certain someone, would be Oscar.

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I’m not sure about you but even without three kids in tow, going through security at the airport makes me a little nervous. The mere fact you have to remember to take out your mobile phone, iPad, perhaps take your coat off and then time it so you walk through at the exact same time your belongings get to the end of the belt, for fear that someone in the line before you might pick up your bits… Well, it stresses me out. Combine that with taking all your own stuff, plus your three kids, all their stuff, your husband AND all his stuff… In those situations, you’re basically screwed.

So picture the scene. You’re about to go through security at geneva airport. Flo is in her baby carrier attached to me, both boys are strapped in side by side in the double buggy. You’ve put everything on the conveyor belt (did I mention they had to check the bottles of milk and baby food I was carrying for Flo too?) and watch it slowly start to be screened. Only at this point, security ask you to take your baby out of the baby carrier AND get the boys out of the buggy, collapse it as it’s too wide for the screening machine and then all walk through the scanner. You can imagine my face at this point. Right.

The boys, clearly thrilled at the prospect of getting out of the buggy, jump out and run through without a care in the world. Chris follows only for the machine to beep. (Of course it does. It beeps EVERY time we go through airport security because EVERY time it’s his flippin’ belt) By this point I can see Oscar and Alfie in the distance, running a muck and about to enter duty free.

Now, I mean this with the greatest of respect but Chris has always been a bit rubbish at doing more than one thing at a time or with any kind of urgency. While he was busy collecting his iPad, phone, keys, bag, BELT etc, having whizzed through the screening, I was basically dragging the kids back to where we were standing.

Flo, now out of her carrier, was equally delighted and having sat her on the floor was herself, about to make a break for it. Thankfully I could wedge her between my feet (where the frig else do you put a baby in those situations????).

“Stand there.” I say to the boys. They laugh excitedly and start to run away again. Obviously, my authoritative parenting voice appearing to work brilliantly in this instance. I drag them back.
“STAND THERE.” I’m a little firmer this time. They do. Right, now to grab all our stuff. I turn round to check they’re still there, Alfie’s stood quietly watching Chris and I, but Oscar’s gone. Panic.
“Where’s Oscar?”. Alfie looks at me like most two and three quarter year olds would, with a look of, am I bothered spread across his face
“Where’s Oscar?” I shout, perhaps a little too frantically/dramatically/like I’m auditioning to be the next Liam Neeson in the next “Taken” movie,
“I don’t know,” Chris shouts back, probably not as loudly as I had done but at this point we’re most definitely causing a scene (because we weren’t before with our out of control kids/conveyor belt debacle).
I run out of security, over to the duty free shop, look right, look left. Nothing. He’s not there. All I see are hundreds of people milling around, without a care in the world but no little dude in a green tshirt and red shorts.
I run back to security, the panic rising
“He’s here,” shout the men and women behind the security desk/screen. All chuckling to themselves, that they have a new friend. In the few seconds I’d turned my back, Oscar had obviously crawled under the security desk and was wandering around their little area, smiling, waving and saying “hiya”. They all thought it was hilarious. Chris even took a photo… but my heart was pounding.

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You see the thing is, amongst the DS community, Oscar is what’s known as a “runner”. In talking to other parents of children with DS it’s not uncommon and contrary to popular belief he’s not just running for the sake of running… I truly believe his escapes are calculated. I fully believe in his head, he knows exactly where he wants to go. If a door opens, he out of there, quicker than a flash. We were sat in my mum and dad’s garden the other day and someone opened the gate. Quicker than the speed of light, Oscar was across the garden, squeezing his way under the arm of the person opening the gate, shielding himself behind someone else, hoping he’d go unnoticed. Dad says he must feel a draft, as as soon as a door opens, he seizes every opportunity to make a break for it.

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So knowing what we know about Oscar, Chris and I have worked out, that when we’re out and about with him, we have to be on our guard. We were attending a party just a few weeks ago and a whole bunch of our friends were there. We knew that we’d probably end up chatting but said to one another that one of us would be on “Oscar watch” at any one time. This might sound a little dramatic and perhaps at times I go a bit over the top but knowing his ability to escape and the fact that he has a tendency to be a little over familiar sometimes (a polite way of saying he’s been known to bite from time to time) we always like to keep one eye on him.

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When we go anywhere new or somewhere we haven’t been for a while, I always do a check of exits/escape routes. That might sound crazy but I honestly do. So on this particular day, discreetly, I had a look round the garden, checking there were no holes in fences or bushes, that gates weren’t open, that he couldn’t get through the garage and then I did the same with the front door. On this particular day I felt assured that there was no way he could make a break. So a few hours in to the party, and while I was on “Oscar watch” my attention was turned away from him for a minute or so while I got Alfie a drink… and then, just like that, he was gone. He’d been playing in the living room, happy as lorry but then the next thing I knew he wasn’t there. I wasn’t too worried at this stage. I suspected he had gone out into the back garden to find Chris. I walked into the garden, had a look round, scanning the crowd but he wasn’t there. Again not to phased, I decided he’d probably followed some of the older kids upstairs as he’d watched them previously and I could tell he’d wanted to go with them. So off I went, scanning the area as I went, up the stairs, opening all the bedroom and bathroom doors, calling his name… But he was gone. Panic began to set in at this point. If he wasn’t downstairs, he wasn’t in garden and now he wasn’t upstairs, where was he? He’s made it out the front I thought, but the door was shut, it was heavy and I surely would have heard it if he’d gone out? I ran down the stairs, out the front door, looked up the street but he wasn’t there either. He MUST be in the back garden I thought, I MUST have missed him. Maybe he was hiding in the garage, as he’d gone in there to have a look round earlier. I ran back inside, through the house, out into the back garden. At this point a couple of people had noticed the panic in my face and started searching too but he wasn’t there. I shouted to Chris that I couldn’t find him, whose gut reaction was to run out the front of the house, while I checked upstairs again. Maybe he was in a cupboard or under the bed? Realising that he definitely wasn’t at the party and must be out the front I raced outside too, heart in my mouth, hot, panicked, willing us it find him… only to see Oscar being passed to Chris by a gentleman and his wife who’d been walking their dog. They said he must have walked out of the cul de sac, crossed a main road as they found him walking on the OTHER SIDE of the main road, “talking” on his walkie talkie. They didn’t know which house he was from but saw the balloons outside our friend’s house and assumed he must belong there. I burst into tears. Relieved, grateful but mostly because I was cross with myself that I’d let this happen. The man who found him told us he was a police officer himself and a detective inspector…
And I cried a little more, not only because I was so grateful he’d been found before he got hurt or taken but mostly because I was so so mortified I’d let him down, when I was supposed to have been watching him.

Oscar was absolutely fine. Completely and utterly unphased. I, on the other hand, was a mess. You play out all the different scenarios in your head, thinking about what could have happened. The what ifs dont even bare thinking about.

But it was the shock I needed. The shock I needed to tell me that I was right to be vigilant and to always check new spaces for him to escape. It turns out I hadnt checked the utility door. A door I assumed opened out into the garden but actually opened out onto the driveway and accessed the street. It was completely my fault. I made an assumption and I was wrong to.

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You see the thing is though, sometimes I think some people think I’m being over cautious about Oscar. That I’m perhaps being that over protective mum and who needs to give him the benefit of the doubt more. I think perhaps sometimes I do. I know he’s learning all the time. There was a time when the front door opened to our house, that he’d dart down the street. Now he may run, but nine times out of ten, he knows to run to the car door and wait patiently for me to open it. Or wait by the buggy ready to leave our driveway and walk alongside us.

But there are sometimes, like at the airport or at that party, that I was wrong to ask him to stand still while I collected our belongings and wrong to have turned my back on him at the party, even for a few seconds.

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I’ve recently been asking myself, why he does the things and acts the way he does. And I’ve realised, that with his first day of school fast approaching, I’m so conscious of wanting Oscar just to conform.

The other day I got Alfie out the car and asked him to walk inside. I then got Flo out and at the same time Chris got Oscar out his car seat. As we all started to walk into our friend’s house I realised Chris was still carrying Oscar and I whispered to him so that others wouldn’t hear “Chris put him down, he’s 4, he should be walking”. Chris looked at me like I’d lost my mind, clearly wondering why it mattered if he was carrying him or not and as soon as the words came out of my mouth, I knew I was being a d#%k about it. Why did I care so much if he was carried in to a party? Does it really matter? I knew it wasn’t about anything, other than the fact that I didn’t want others to see him as a baby.

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Likewise on Oscar’s trial session at school, I recently wrote about how well he did walking to school as I pushed Flo along in the buggy. I wasn’t sure if he was going to manage the walk to school. If the distance was going to be too much for him or it be too much of a challenge for me to manage the buggy and him, he who has little or no concept of danger and who has a tendency to run ahead or step out into the road. And even though it was successful, I realised Oscar walking to school that day was more about ME wanting him to be seen to be normal and to conform. I didn’t want him to sit in the buggy. I mean no one else’s 4 year old would need the buggy, would they? The stupid thing was, (and by stupid I mean me), as soon as I got to school and we were waiting to go in, I realised a lot of 4 and 5 year olds were in the arms of their parents. Obviously feeling apprehensive about their morning, they were having a cuddle with their mummies, while they stood and chatted to other parents. Were THEY bothered they’d had to do that? Of course not. And quite ironically again, as Oscar was walking home, me following with the buggy, I briefly got talking to another Mummy who was battling with her 4 year old because he didn’t like walking and she told me she usually takes the buggy everywhere for this very reason.

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I’ve realised that my behaviour recently has been ridiculous and I just need to get over myself and stop worrying how things look to other people. Does it really matter as long as my son’s safe? He needs us at the moment. To shadow him, to watch him, to be his eyes and ears, I guess. He’s unpredictable. We can’t guarantee how he’ll behave or react in certain circumstances. We get that and are mindful of that. This is just the way it is at the moment but I’m pretty sure it won’t be like this forever. Having young children is hard work. Having young children, one with additional needs, can at times be harder than I first imagined. Not because of the DS but more because of the pressure you put on yourself as a parent, to be the best parent you can possibly be for them. For now all you can do is hope. Hope you’re doing your best. Hope they will learn what to do and what not to do. And hope, that although at times your heart pounds with panic and your nerves are shot to bits, you hope your little boy will always have the same adventurous passion for life that he shows now. Without that, life would be terribly boring, surely? ;0)

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“What makes you different makes you beautiful”

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“It’s Oscar. Hi Oscar,” I heard a little voice shout over the noise of the preschool room. We’d just walked through the door and the boy who’d noticed us walk in came over and he and Oscar greeted each other with a big hug. It was a lovely exchange and made me smile. I realised though that I hadn’t seen the little boy in the preschool room before and considering his size I decided he was probably just starting in that room, and knew Oscar from when they used to be in the younger children’s room. As I left them to it, I also noted that it had been a long while since Oscar had been greeted that way. I mean sure, he always gets a warm welcome from the staff but it dawned on me that the kids his own age, the kids all fast approaching school age, didn’t seem that fussed by Oscar anymore. Not like they used to be anyway.

And don’t get me wrong, it appears Oscar couldn’t care less. He always strolls in confidently and happily, hangs his coat and bag on his peg (with my help, of course) and then off he goes. He doesn’t seem phased in the slightest that none of the other kids are in the least bit bothered by him being there… It’s just me. Over sensitive, over protective me. Because here’s the thing; while I know Oscar has friends, I can also sense a shift in those friendships since his mainstream typical peers have started to grow up and Oscar, although doing well in so many areas, has in some areas started to lag behind.

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I’ve heard the phrase “Our kids are more alike than different” a lot recently. It’s in reference to the fact that children with Down Syndrome are much like their mainstream typical peers. I think this is true in a lot of ways. Oscar is cheeky just like most other (almost) 4 year olds. He’s inquisitive and adventurous, caring and sensitive to how you’re feeling, determined but defiant just as much as the next kid. But in a lot of ways, he so very different from his typical peers and of late I can’t help but pick up on this.

I’m not saying always, but sometimes, he acts differently than the others kids do. When he’s upset or unsettled he chews on his fingers and cries. When he’s excited, he runs in circles doing his breathing in and out of his nose thing. When he’s cross he head butts doors (seriously, I won’t bore you with it now but the head-butting thing is a whole other issue for another day). When his brother Alfie falls over, instead of helping him up, like other 4 year olds might, he drops to the floor dramatically himself. He doesn’t always act like a “typical” little boy and that’s because he’s not.

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You see, I kinda feel like we’re at this in-between stage. When he was younger, other kids his age had no idea he was any different to them, but now he’s older and friends his age have become more aware, it’s suddenly really obvious to me that they see him differently.
The other day at a friend’s house, Oscar, a couple of his friends his age and a 19 month old were playing in the kitchen. The oven was on and knowing a certain someone was not to be trusted, I walked in and told them that perhaps it’d be a good idea if we all went to play in the living room instead. To which one of the little boys (Oscar’s age) turned to me and said “Yes, the babies aren’t allowed to play in here either.” And just like that, I realised that he was referring to the 19 month old but also referring to Oscar as a ‘baby’. In his eyes, because Oscar’s not able to talk to him like his other friends can, he’s classed as a baby. Simple as that.

And I get it. To an almost 4 year old, when a child that’s a little bit smaller than them in stature, still in nappies and doesn’t have the capability to engage in conversation about the latest Paw Patrol episode they watched, in their eyes, of course they’re younger than them.

When Oscar and his friends are all playing together, sometimes he plays beautifully but other times he might decide to tip the entire contents of the toy box onto the floor because he knows it makes a great big noise that he quite likes. When this happens the other kids his age, just look on in bewilderment. And when Oscar decides that he’d quite like to join in the girl’s role play game at nursery, when they all lie in their makeshift bed, with heir blankets over them, sometimes Oscar decides to take off all the blankets and run away with them, laughing to himself. When this happens Oscar is met with shouts of “Nooooooo Oscar. Stop it. I was playing with that first”. And every once in a while, when Oscar decides to give his friend a hug because, well, he’d quite like one, he just goes in for the tightest longest hug imaginable, leaving his friend looking at me, with a “Please save me” look in their eyes, because it’s kinda squishing them. You see, Oscar doesn’t always get that tipping the contents of the toy box on the floor is just annoying. And stealing the girls blankets? Yeah, so not cool. Oh and the tight hugs? Oscar hasn’t quite grasped the whole personal space/boundaries thing yet. We as adults get all of the above but to an almost 4 year old, although they might like him and find him loveable at times, at the moment, mostly I think they find him kind of annoying.

It’s not just the 4 year olds though. Oh no, even Alfie, my two year old has started looking at me slightly puzzled at some of the stuff Oscar does. And he’s only frickin 2 for goodness sake. And the truth is, I don’t blame them. I don’t blame any of them. I totally and utterly get why they’d react that way. Hey, when Oscar does some of the things he does, I myself raise an eyebrow too.

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It’s interesting though because the other day we were in the park and some older kids, I presume around 7/8 years old took a shine to Oscar. He stood there watching them play for a while, then started laughing at them because they were jumping off the climbing frame. The more Oscar laughed, the more they played up to him. The jumps became bigger. The pretend falls to the ground became more melodramatic. And the more Oscar dissolved into fits of giggles, the more attention they paid him. They helped him as he climbed up to join them and talked to him and even though he couldn’t talk back, they didn’t seem to mind. They accepted him just as he was, regardless and as we moved away, I heard the two kids say to each other: “Aaaaahhhh he was so cool and funny wasn’t he?”
“Yeah so cool”

My point being, when kids are a bit older, they might “see” different, but they’re ok with that.

So I’m wondering at what age should the whole DS thing be brought up? A while back I thought it’d be much later down the line, but I’m thinking now it might be earlier. Some people might be of the opinion that nothing needs to be or should be said. Some think the sooner the better and others might say wait til they ask. There is a part of me that thinks, children Oscar’s age are just these small, little people who couldn’t possibly understand but then there’s the other side of me, the side that hears a child refer to Oscar as “Naughty Oscar” that feels it might be best to sit them down there and then and explain that it’s not that he’s naughty, just that it takes him a little longer to understand.

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A few weeks back it was World Down Syndrome Day and on that particular day, a whole bunch of us were going round to a friend’s house for lunch. My friends had suggested we all wear our mismatched socks including the kids and as I arrived I was so incredibly touched that all of them, every single one, had remembered to put their brightly coloured socks on. I had wondered though, had the kids not questioned why they were being asked to put on odd socks that day? Did they not think it was ridiculous and want an explanation? I asked my friends. A couple said that their kids hadn’t even noticed. Another said that she made a game out of it and said: “I know, wouldn’t it be really funny if we all wore different socks today?” Which was met with a giggly “ok”. But then there was one other. The little girl who I’d have said would be the kid who’d have questioned such silly antics. So when her mother said that they were to wear mismatched socks today, her response was of course: “but why, mummy?” “Because it’s World Down syndrome day and Oscar and his family celebrate it.” She thought for a while and then she asked, “What’s Down syndrome?” Her mummy, a very dear friend of mine, is more than capable of explaining it to her little girl but said rather than launching into it there and then, deflected the question and said to me she’d wanted to check with me first, as to what I’d like her to say.

So here’s the thing… What DO I want her to say? What do I want any of my friends to say to their children? What do Chris and I say to Alfie and Flo when they’re old enough? What do they then say it their friends when they’re asked the question, “How come your brother looks, talks and acts that way?” At what point do I want them to say it? Today? Next month? Next year? In a couple of years? I’m not sure. Some children, like the little girl who was puzzled by the mismatched socks might be ready for that chat now, others may not understand yet.

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When the time’s right though, I think I want them to say that Oscar is a little boy just like them. He’s a little different to you and me but that that’s ok. I want them to say that just because he acts the way he does at the moment, they must try not to get cross and try to be patient if they can. That things just take him a little longer to understand, but that he’ll get there in the end. I’d like them to tell them that he may find some things harder than other people do but that perhaps there are some things they might find difficult in their lives too. Not everyone’s going to be good at everything after all. What I would love them to tell them though, is all about Oscar’s strengths. That he’s brilliant on the trampoline and on his scooter. That he can run super-fast just like they can. Oh and when they’re feeling sad, Oscar will notice and he’ll give them the biggest hugs. And finally, that just because he can’t talk to you at the moment, doesn’t mean he never will. One day hopefully he’ll be able to tell you exactly what he thinks of Paw Patrol.

I’m guessing my worries are heightened because later this year Oscar will be starting school. I know he’ll be supported well, as thankfully we have the 1:1 hours he needs, but I worry about friendships forming. Will he make friends? I know in his own unique way he’ll be able to communicate with his classmates but will they have the patience to persevere? All any mother wants for their child is for them to be liked. A friend and I were talking recently and we said that none of us can tell our children who to be friends with or who to like. They’re going to make up their own minds… Even at the grand old age of 4. All we can do is hope that they find their own way in life. She also said she hoped Oscar would be in her daughter’s life always. I said I hoped so too.

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A few nights ago my sister Clare sent me a photo of my niece Bella standing next to a poster. The poster had on it some of the images of the photographs taken at the “This is me” exhibition (the charity we belong to had put on as part of WDS Awareness Week) and amongst those images was a photo of Oscar. Bella had asked my sister if she could have the poster. Clare had said, “of course but why do you want it?” To which Bella replied “Because I want to put it up in my room and show all my friends my cousin Oscar”. When I read the message from my sister my eyes welled up with tears… Bella is 4 years old. Not so long ago I asked my sister Clare if Bella understood about Oscar not being able to talk that well (yet) and she replied with the following…
“She often now notices people who have Down Syndrome and will say, he or she is just like Oscar aren’t they Mummy?… And when I say, yes and what is it that Oscar has, she doesn’t say Down Syndrome, she always says “magic” because he’s just that extra bit special isn’t he?”

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I’m not sure she completely understands the whole DS thing but what I do know is that she loves him despite the fact that he ruins their games sometimes, takes a toy off of her that she’d been playing with or gives her hugs that are just that little bit too tight. In spite of all those things, she truly, truly loves him. We CAN’T tell our kids how to act, feel or who to like (and I would hate for them to feel forced to be friends with him) but I hope that one day, his peers will understand just what he’s about. A little boy more like them, than different, sure… But someone that they want to be around, regardless.

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