A baby no more?

It’s a big day this Friday, and I don’t just mean International Women’s Day, or the mums’ tea party at preschool (although both of those are pretty important, especially the latter which I am told will involve cake). This Friday, Baby Orange turns two. The big 2. In my mind, turning two marks the end of babyhood in a child’s life. When The Beep had her second birthday I remember feeling sad that her baby days were over but excited for her future and proud of all her blossoming skills and talents.

For Orange it’s a little different. At two, he will still be very much dependent on others in the way a small baby is. Lots of the markers of babyhood that mothers are often quite relieved to leave behind remain a part of our lives. I found this interesting post written by a mum whose last child was just stepping out of babyhood and the comparison is stark. On her list of things she won’t miss about the baby days there wasn’t really anything I can say we’ve waved goodbye to yet, or will be anytime soon:

1) Pureeing baby food. If chewing actually means squashing food on the roof of your mouth while not moving your jaw at all then Orange has got it nailed. Of course this means everything has to be mashed. Finger food? You must be joking. I’ll just wave it about and laugh thanks mum.

2) Not knowing what’s wrong. Orange can’t tell me with words if he’s bored, doesn’t like the green beaker, wants to go to bed, or would rather watch Ben & Holly than Peppa Pig. Family and friends will testify to the fact that he’s a very vocal little boy, jabbering away hours of nonsense and giggles and singing along in the car (to 80s power ballads if he gets his way), but he cannot talk. He is getting better at shouting and whingeing though, so watch this space.

3) Wondering whether Play-Doh and crayons have nutritional value. Well, we haven’t even got to that stage yet and you know I would be delighted if the boy would put anything in his mouth at all. (see point 1).

4) Reading the Usborne ‘That’s not my…’ (fill in with bear, cat, monster, princess). Orange loves a good book, I mean really loves a book. He will squeal with delight at Peter Rabbit, point at the page and, if you’re lucky, will turn the page with you at a moment of his choosing, but whether he has any idea what a rabbit is, or even a bear, cat, monster or princess, it’s impossible to say. His level of understanding is a constant mystery to us. All we can do is continue to give him as much variety in life as we can and hope that some of it sinks in. Or creates the right neural pathways. Or something like that.

5) Possets. Substitute for dribble. Constant dribble. We have low facial muscle tone to thank for that, which reminds me we need a bulk order of those absorbent bandana bibs. Ok, it’s not milk sick but it’s a pretty slimy affair with an Orange about.

6) Dirty nappies. A fact of life in our house for many more years to come. See point 8. And my goodness are they expensive. One of the ‘hidden’ costs of having a child with disabilities.

7) Watching The Wiggles. Read ‘Death by cBeebies’. Actually I’m quite happy to keep this one. I can’t be the only mum alive who has accidentally left Nickelodeon on after the kids have gone to bed, or absentmindedly started humming the tune to the Jimmer Jammers while cooking dinner. And I know of at least one grandparent who is guilty of putting Peppa Pig on the telly when there are no grandchildren on the premises ;). Children’s TV is cool. I’m sure I might feel a little sad about it if Orange is still watching Mr Tumble when he’s 15 but for now, it’s a welcome and jolly addition to the household of a morning.

8) Reading Princess Polly’s Potty book, again. It’s items like this that I pick up and hold and wonder whether we should keep, just in case, or send to charity because they won’t be needed again in our house. For the foreseeable future, Orange is in nappies. He can’t tell us when he needs the loo, nor can he get there independently, although he makes a pretty damn big deal of a number two. Called being a boy, I guess.

9) The inability to amuse oneself. It is at this point in the article that I’m afraid I lost patience. Bemoaning lack of time to get anything done pretty much guarantees getting the backs up of most parents of children with additional needs. Irrationally and unreasonably so, probably, since no-ones trials and difficulties can really trump another’s outright, but the hours, weeks, months and years of extra work that go into raising a child with additional needs go way over and above the experience of raising a typical child. Time to oneself, even to work, is often a long forgotten luxury.

10) Bottles and multicoloured Ikea plates and straws and tiny tupperwares and the accumulation of plastic that seems part and parcel of having a baby. Ha! Ha ha! Come look at my house lady and I’ll show you accumulation of plastic. Currently we have a giant chair on wheels with an oh so tasteful decal of a bumble bee on the sides, and a jauntily decorated wooden standing frame with quite possibly the scariest looking monkey you’ve ever seen on either side. A changing platform, bath hoist, stair lift and outside platform lift for the garden are on the cards. Plastic matting, sensory toys, special beds and multiple seating options too. We are already the proud owners of mountains of plastic toys that generate some of the most irritating sounds the human ear is ever likely to behold, and boxfuls of various primary coloured articles bought in panic, seeking something, anything, that would attract (and maybe even hold for a second) the attention of a boy who at one stage we were told probably couldn’t see or hear. Come and gawp over our ever growing collection of beakers, cups and bottles that Orange has no idea what to do with, swathes of syringes for his meds, and spoons he won’t put anywhere near his mouth (see point 1) and then we’ll talk plastic.

All these markers of babyhood will be part of Orange’s life well beyond his second birthday. In many ways, caring for Orange is quite a lot like having a giant six month old. And yet something strange is happening that I can’t explain. Given his high level of dependence and extreme delays in development, it’s an unexpected progression but he’s seeming more and more like a boy every day. This has taken me by surprise and I still can’t quite put my finger on what’s changing. It’s subtleties of face shape, expressions of emotion above and beyond a baby cry, a blossoming sense of humour and revelry in the ridiculous, a deeper, grown up boy’s tone to the voice and an alarmingly toddler-esque whinge that has come to light only in the final countdown to turning two. Is it possible that my little boy, who can’t yet crawl, stand or feed himself is managing to be bang on time with the terrible twos?

For a lot of mums whose children have disabilities, the second birthday is a bit of a watershed moment. The threshold between baby and child is well and truly crossed according to the calendar, but the little person they see in front of them tells a different story. It is often at this point that disability becomes more strikingly obvious to the outside world. A baby in a buggy becomes a larger child in a posturally supportive pushchair, a lack of language and mobility a source of surprise and questioning, getting in and out of cars with a child who can’t support their own body weight starts to become a real challenge and you begin to wonder what your child will sleep in when they outgrow their cot, or how you’ll get them up the stairs to bed when they’re a year, or ten, older and still unable to walk. That sort of thing.

What really hits home though is the lack of friendship. Lacking mobility and communications skills, and spending vast amounts of ones time at therapy and hospital appointments seriously limits a child’s ability to make friendships. At this stage in The Beep’s life, she was looking forward to sharing a joint birthday party with her best friend, played an active part in planning the food they would eat and the games they would play and then stood by her right not to do any of it on the day of the party at all. ‘It’s my party and I’ll grump if I want to’ was The Beep’s birthday mantra. But she had friends who came and enjoyed the party around her. Real friends who sang, painted, hugged, ate, popped balloons and fought over toys. Orange doesn’t have that in his life. My big goal for his third year of life is to help him develop relationships with his peers. I’m rather excited about a very promising friendship with another little SWAN who lives a few miles away and I am going to be brave and take him to the new village toddler group. And try not to let my jaw drop at all the amazing things the other kids can do.

With all that lurking in the background and tip toeing its way into our reality day by day it would be easy to feel slightly melancholy about Orange’s second birthday but it is with great relief that I am feeling a burgeoning sense of excitement. The presents are wrapped (boy were they hard to choose, but that’s another post), a day out at the aquarium planned with tea and cake in the afternoon. Beep has already put her hand up for helping Orange open his gifts, the offer is sweet even if the motive is suspect… In fact I have her to thank for a lot of my unexpected excitement I think. Flicking through baking books together this afternoon she declared that Orange must have a dinosaur cake for his birthday. A chocolate one, with green buttercream and scary spiky teeth. A Tyrannosaurus Rex it must be, apparently. I have stood in the kitchen for precisely 23 minutes this evening trying to figure out how to fashion various cake tin shapes into anything vaguely resembling a dinosaur but will probably end up winging it well in the small hours of Friday morning.

Expect pictures in the coming days of badly decorated cakes and chocolate covered children as we say Happy Birthday to our darling Baby Orange. And here’s a picture from this evening of some of that ever multiplying plastic, pretty spectacular huh?

 

Conquering consonants

This last week has been somewhat of a struggle. I cannot seem to shake this damned virus. I have been coughing and coughing and coughing until I am almost sick. The thought of sitting down to update here has been constantly on my mind but somehow I couldn’t dredge up the mental stamina to open a new blog post, let alone fill it. Really all I have been capable of in the evenings is flicking between email, facebook and twitter, letting the rest of the world fill my head with news, entertainment and general drivel.

In the midst of all this Orange has done something rather wonderful. One morning while sitting in bed cuddling my two bright-eyed morning babies and watching Peppa Pig on my iPhone, Orange turned to look at my face, raised his little eyebrows and said ‘Mama’. If it is possible for a heart to actually melt then this is the moment that mine did. The loveliness of the moment was all the greater because The Beep was there to share it and we were all snuggled up under my duvet watching the sunlight peeping through the trees. Sadly daddy was not there with us, but I know he’s secretly holding out for Orange to say ‘Dada’, so I’m coaching him to say that now instead.

The voice of doubt has been ringing louder in my head though, despite Orange’s New Word. I don’t know why, maybe it’s this virus that’s making me feel more negative than usual. What cuts deep is when The Professionals have their say on Orange’s development. They don’t want to commit either way, so come out with some vagary like ‘well, his use of consonants and good variability of tone are both promising signs that speech might develop’. Note the word ‘might’. So instead of revelling in the joy of my little boy saying ‘Mama’ (and he’s done it again since, by the way), I’m left wondering if it was just a fluke and whether I should even be celebrating it? If Orange didn’t have the difficulties he has, I wouldn’t even doubt new milestones that he hits. But because, week to week, we hear a different story from professional to professional, my confidence in assessing my own son’s capabilities is at an all time low. I doubt myself. I don’t want to seem silly. So I have kept some of his achievements to myself. I think, no, I know that I need to stop doing this.

This post is the first step back to a more positive place where Orange’s achievements are celebrated with pride. And not just outward pride. It’s the inner confidence that I need to work on now. That beaming, sure footed feeling you get when your child does something new. So here’s to Orange. And here’s to words. Bets on for what his next one will be?

Oh yeah, look how good my standing is now!

I forgot I’d taken this picture, but I just found it on my iPhone and had to share. Orange’s standing is coming on in leaps and bounds. He just loves it and wants to do it all the time. Here he is, standing as tall as he can (helped by the ever ridiculously tall hair)…And thanks to Jamie and Ethan for the cool hand-me-downs, they look awesome with his Piedros.

 

Disappearing under the sofa

This week, Orange has taken rolling to a whole new level. You know that thing that babies typically do at around 4-5 months where they see something they want and then figure out how to get to it? Well, Orange is doing it now. I was going to write ‘better late than never’ but then realised how inappropriate that is. There are bound to be many ‘normal’ things that Orange isn’t just late for, but never actually does. We don’t know what these will be yet. Only time will tell.

But for now, he’s rolling and rolling and rolling and doing some mighty fine little press ups and scrunchy, kicky little movements with his legs. He is pretty determined to get on the move, even if his little body isn’t quite up to the task. If I could dedicate every second of the day to his physiotherapy to help him get moving I would. It just never feels like I can do enough. I am always short. Lacking. Tired.

Tomorrow we see the geneticist for the first time. I was hoping to be all organised and turn up with a little print out summary all about Orange but I have failed majorly on that front. So a discussion and examination it will be. Oh god. What if they suggest something they want to test for? I am dreading it being awful news. It could be, it really could.