And then she was three…

“Lil Z” may not be such an apt name any more. The girl hasn’t been little for some time – in fact, she is surprisingly tall. Her legs go on forever and her height is only hidden by the fact she is usually sitting. In reality, I suspect she is actually quite a bit taller than some of Vegemite’s 5 and 6-year-old friends.

And now, “Lil” doesn’t apply so much to her age, either. Lil Z has turned three.

Three feels like a landmark age. Perhaps it’s because I can no longer consider her a baby – three is definitely no longer a baby. Three is firmly in toddlerdom – or even moving slowly towards preschooler. No longer a baby.

I wish I could say it makes me happy – and it does in a way – but it also highlights that Lil Z at three is vastly different from most children at that age. I remember when Vegemite turned three – particularly because Lil Z had just been born two weeks earlier. She got a CD player and we have photos of her dancing gleefully to the Wiggles. She loved butterflies and I managed to make a butterfly cake for her.  It was probably her first birthday where she realised the significance that it was her special day.

Lil Z’s third birthday was not like this. We organised a birthday breakfast party for her, but didn’t get the time just right, and she was grumpy and ready for her morning nap. When she woke up, we opened her presents – Vegemite is Lil Z’s official gift opener. But Lil Z isn’t particularly interested in toys, so there wasn’t a joyful response as her sister presented her with each one. My greatest reward was when she gave her new Lola doll (an impulse purchase on my part, as she enjoys watching Charlie and Lola) a very long and careful stare.

I am slowly learning to adapt family celebrations to Lil Z’s personality. But, like with Christmas, it is hard. Especially when Lil Z has an older sister who has been planning THE MOST AMAZING PRINCESS BIRTHDAY PARTY OF ALL TIME for about a year now. Vegemite and I have been discussing themes (it has slowly moved from princesses in general to a greater emphasis on the movie Frozen) and decorations and costumes (Elsa dresses have apparently sold out worldwide, so Grandma has sewn her one) and invitations and party bags for what seems like forever. So it feels a bit unfair to have a small low-key party for Lil Z, at which she only made a brief appearance before going down for a nap. But, I keep reminding myself, different things make each of them happy… and that is OK.

What is harder is the acceptance that not only is Lil Z not developing like other three-year olds, but that over the course of her three short years, she has regressed. She does not have skills now that she had at 3 or 4 months old. She doesn’t smile spontaneously anymore. She isn’t able to prop herself on her elbows or easily roll across the floor. She isn’t interested in hanging toys on a baby gym – in fact she hardly looks at them at all. She isn’t able to eat or drink orally. It is hard to celebrate your child growing up when it doesn’t necessarily mean learning new skills or coming closer to independence.

[Side note: Stupidly, I decided shortly before her birthday that I would do one of those lovely video compilations of photos and video clips for Lil Z's third birthday. Of course I didn't really have the technical knowledge (yes, I know it is supposed to be easy on a Mac, but quite honestly, it isn't) or the time, so it never really got off the ground. But looking at video clips and photos of Lil Z from birth until present really drove home her regression in some areas. The activity didn't turn out to be a feel good exercise for me on any level and I gave up in the end, deciding I really didn't want to share what the video showed all too clearly to me.]

It is also about appearance. Until recently, it hasn’t been immediately noticeable that Lil Z has special needs. She has looked like any other baby in a stroller – albeit one that never smiles back at you and often does some strange things with her hands. But more and more, her differences are noticeable. And more and more, we attract looks (although so far, fortunately few stares or glares) when we’re out and about. Children point to her and say “Mummy, why is that little girl-” before being cut off swiftly by their embarrassed mother. I am usually so busy with Lil Z that the looks don’t bother me, but I worry that they will increasingly bother Vegemite.

[Side note: Vegemite came home from school a few weeks ago and declared that one of the little boys in her class got in trouble for making fun of her sister. I braced myself for the first, and certainly not the last, insult that Vegemite will endure on behalf of her sister. "What did he say" I asked, prepared to give my best warrior mummy speech. "He said she has funny hair" Vegemite replied. Oh. That. Well, actually, he's right. Lil Z has crazy hair that grows in every direction and can only be managed by giving her a palm tree ponytail on the top of her head. Not many three-year olds sport the palm tree look, though I don't think that has anything to do with her special needs, but rather her unfortunate hair genes. Her uncle, who also sometimes sports the palm tree look, knows exactly what I mean...]

And it is about managing a growing child with special needs. Lil Z wants to be held a lot – but at 15kg and 110cm tall, this is becoming a growing problem (if you will excuse the unintentional pun). My heart breaks at the thought that I won’t be able to hold her close and walk around, like I do now to comfort her. Or that she won’t be able to fall asleep with her head on my shoulder because she’ll be too big. But it is inevitable. I know, I know, children grow up and I need to deal with it, but giving her comfort is one of the few things I can give her…

More than that, it is becoming increasingly difficult to lift her in and out of the bath. Or even to pick her up from the floor. A baby with mobility issues is manageable, a gangly three-year old is a much greater challenge. My back regularly aches from lifting and carrying her, and I also wonder how much longer I will be able to ask those who care for her to lift and carry her. And what to do next. I suppose the next step is moving her around the house in her stroller (and eventually a wheelchair), but she still wants to be held and carried and the thought of denying her this when she has so few other comforts is hard.

And it is about letting go. At three, Vegemite attended daycare three days a week and loved it. But it is harder to let Lil Z go, not only because of her additional needs, but also because she is my baby. Speaking to the special school where she attends playgroup the other day, the teacher mentioned that beginning in the July term, Lil Z is able to attend kindy on her own, one day a week. QB’s response to this news was “great” but mine was much, much less enthusiastic, and accompanied by a number of reasons I don’t think she is ready for the move. But to be honest, I’m not sure which one of us isn’t ready. The kindy class will be small (3 children) and Lil Z already knows the other little girl in the class from playgroup. In fact, it may be the thought that Lil Z might actually make a friend (in her own Lil Z kind of way) may well be what compels me to send her in the end.

So, Lil Z turning three has raised a number of difficult issues for me. But at the same time, I also want to celebrate my beautiful little girl who has made it to three. So, rather than leaving you on a dark note, here are the top three things that make Lil Z at Three such a special girl:

  1. She can charm the coldest of hearts. She probably won’t smile at you – in fact she may not even look at you. She isn’t interested in your conversation or toys and will steadfastly look past you to the television. But no one can resist her when she snuggles up and rests her head on your shoulder. No one.
  2. She gets her point across. Lil Z is nonverbal and has very limited purposeful use of her hands, but she still manages to communicate what she wants very clearly. And thanks to her charm, as well as her ability to get her point across, she usually gets what she wants.
  3. She insists on dancing to the Australian national anthem. I’m not sure how the very strict principal at Vegemite’s school feels about it, but Lil Z loves to attend Friday assembly and have a good bounce and sing-along when they play the Aussie national anthem. Admittedly, they play a very jazzy version of it… but it never fails to make me smile at her enthusiasm!

So happy third birthday Lil Z. I can’t wait to see what adventures your third year of life brings.

A song to run to

Sometimes I have trouble keeping up with the little things in life. Like Facebook. Or my blog (since you may have recently noticed a period of long silence, due to the very basic fact that I haven’t had time to write). So, when a friend posted on Facebook that she was looking for new songs to listen to when she went running, I really wanted to respond, but didn’t immediately, and then next thing I knew, a week had passed and I’d well and truly missed the opportunity to share my opinion. Which was disappointing, because although this friend and I have completely and entirely different tastes in music, I’d once asked a similar question and hadn’t really received any suggestions, which I found frustrating, so I had really wanted to respond.

So, Ali Mango, this one is for you – better late than never…

To begin, can I just say that I really don’t understand people who enjoy listening to podcasts while they run. Really?

I should probably also admit that I don’t often run with music. This is partly because I’m usually running with someone (either my running buddy or Lil Z) and partly because sweaty ear buds are unpleasant (not to mention they hurt my ears after a certain point). But there are those early morning mid-week runs where I’m on my own and need some tunes to keep me motivated.

And I should also add a disclaimer that I haven’t really updated my musical repertoire since moving to Australia – apart from the influences of my 5-year old daughter. The soundtrack to the movie “Frozen” is the currently most played album on my iPad – and that isn’t my doing…

But speaking of Frozen, I’d almost be tempted to listen to the song “Let it go” when I run… except that after listening to it at least 30 times during Vegemite’s nightly bath, I really don’t think I need to hear it any more.

So… here are my top 5 running songs:

  1. The Fighter by Gym Class Heroes. Its good and inspirational. And (if you can forgive me a cheesy moment), for me it sums up Lil Z, who is a fighter, yelling ‘kiss my ass’ and giving everyone hell who stands in her way. And yep, ‘I’ll be in your corner like Mick, baby, ’til the end / Or when you hear a song from that big lady’.
  2. Mr Brightside by the Killers. This one just makes me happy because it reminds me of dancing on the bed with Vegemite when she was little.
  3. Breathe by Anna Nalick. Not what you’d expect in a good running song because it’s a bit slow, but I like it anyway. Maybe because (if you can forgive me another cheesy moment) the lyrics have real meaning: ‘Cause you can’t jump the track, we’re like cars on a cable /And life’s like an hourglass, glued to the table / No one can find the rewind button, girl / So cradle your head in your hands / And breathe… just breathe’. 
  4. Firework and/or Roar by Katy Perry. Hey, I’m the mother of two girls, so it is inevitable that Katy Perry is HUGE in our house. And I secretly like kind of like her, too…
  5. It’s hard to choose number 5, but it is probably a tie between Infra Red by Placebo (mainly because Brian Molko makes me go all melty inside) and pretty much anything upbeat by Bruce Springsteen (because he makes me happy).

And now its time for a little audience participation. We can all use a bit of new inspiration from time to time. What’s your favourite song to run (or walk or exercise) to?

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Getting away with it

Cool girl at the wedding

Well, we finally did it. After over a year of taking separate holidays and doing day trips rather than weekends away, we finally loaded up the whole family and went to Noosa for a long weekend. And survived. Hell, we even enjoyed it.

We haven’t intentionally avoided travelling with Lil Z – apart from international trips, that is. I think QB and I were just scarred from our last weekend away, when we sat up most of the night, watching Lil Z have a series of seizures and wondering if we should call an ambulance (and wake up everyone else in the B&B and end up in a strange hospital). The next day, Lil Z screamed. And screamed. And screamed. We packed up and went home early. So, until now, we haven’t wanted to repeat the experience.

The motivation behind the trip was an invitation from our former nanny to her wedding – which was taking place on the beach in Noosa. Once the “save the date” card arrived, I began planning. I convinced our au pair to join us, luring her with the promise of a free beach holiday in exchange for a bit of extra babysitting (it wasn’t a tough sell). I think the fact that we would have 3 adults to help with Lil Z was a crucial factor in our decision to go.

I spent hours searching the Internet for accommodation that placed us close enough to all the local attractions, so that we could walk everywhere, split up and go different places, and that we could try Lil Z out with different experiences – and still be close to ‘home’ if it all went wrong. I even managed to convince QB to take a half day off work (AND miss the rugby) so we could get to Noosa in time to enjoy our first evening. And then I made list after list of all the things we needed to pack.

It took the au pair and me the better part of a day to pack all of Lil Z’s supplies. And there was a point when I was worried that all of Lil Z’s supplies, clothes (she vomits a lot, so lots of changes are necessary) and pram wouldn’t fit in the car – but QB exercised his engineering skills and made it fit (there was even a small space where you could see out the back window!).

We arrived at our beach house, set up Lil Z’s travel cot, and headed out to the beach to watch the sun set. Vegemite and the au pair waded in the ocean while QB, Lil Z and I just stuck our feet in the sand. It was good.

After the beach, we went out for pizza. It was a Friday night and the pizza place was packed and very noisy. Lil Z doesn’t cope well with situations like that, so I was expecting one of us to end up eating pizza out of a box at home. But no, she coped admirably – sitting in her pram for a bit and then was quite content to sit on my lap for the rest of our time. In fact, she was so good, we decided to go for ice cream afterward. By the time we got home, it was well after both girls’ bedtime. I don’t think Lil Z even registered that she was in a strange travel cot, she just immediately fell asleep.

The next day wasn’t perfect, but it could have gone worse. Vegemite and I headed to the beach early, hoping Lil Z would join us later. However, Lil Z loves her routines, and she preferred to have a morning nap instead.

Later, QB and Vegemite went for a swim in the pool of the complex where we were staying. I took Lil Z to the pool, hoping she might enjoy a swim too, but the water was too cold. After enjoying her bathwater-warm hydrotherapy pool for so many months now, she was not impressed by an unheated swimming pool. In the end, I sat on the edge of the (slightly warmer) kiddie pool with her, where she tolerated splashing with her feet for a bit.

I had to remind myself, that while I had hoped to achieve great things, such as getting Lil Z to the beach and swimming in the pool, that isn’t always what she wants. And hey, we’re on holiday, the girl should get what she wants, even if it isn’t my picture perfect idea of what she should be doing.

Then it was time to get ready for the wedding. Getting ready for anything when you have two children is a challenge, and Lil Z always seems to sense what I’m doing and starts fussing and demanding attention. We were running late and again, I was a bit stressed. Still, we managed to get everyone looking relatively presentable and headed off.

Lil Z wasn’t impressed by the wedding – particularly when we got rained on mid-ceremony – but at least she didn’t wail. To be honest, I found the whole wedding a bit stressful – trying to get everyone ready and there on time, keep Lil Z (and Vegemite) happy throughout the service, find a place to park the pram that wouldn’t be in the way, etc. So I was grateful when QB suggested we stop at a cafe on the way back from the beach to grab a glass of wine before handing the girls over to the au pair and heading off to the “adults only” reception. Oh did I need it.

The reception was a novelty – time on my own with QB. We drank too much and even danced a bit (shock! horror!). At dinner we ended up sitting next to a couple who had also left their two children for the evening, and inevitably ended up talking about kids. It was a good night.

The next morning, however, was stressful again. We under-estimated the time it would take to pack everything back into the car and ended up scrambling to be out of our beach house by the requisite 10am. There was much snapping at each other and a fair bit of shouting as well. But we eventually got everything into the car and headed off for a late breakfast. Lil Z slept, QB enjoyed his first proper ‘cooked breakfast’ in a long time and I got the biggest coffee the cafe had to offer. Once again, it was good.

Before we headed home, we went walking in the National Park. The first part of the track was marked as wheelchair accessible, and QB obviously saw the second, non-accessible, part as something of a challenge, since before we knew it, he was off, pushing Lil Z down the dirt track at speed. We didn’t see them again until we finished. We had ice cream, climbed in the car and headed home.

Although she coped with the whole trip well, I think arriving home was Lil Z’s favourite part. When I put her down on her blanket for a good roll on the floor, she had the biggest smile on her face ever.

And that was good. It makes me inexplicably happy that the girl loves her home comforts. Maybe because there was a time when she was equally miserable, wherever she was. Now, she can cope with everything from a strange bed to a noisy pizza joint. But what she really loves is being home. It’s a validation that we have managed to turn our new house in Brisbane into a home where she feels happy and secure. So, while having a weekend away was good (albeit sometimes pretty stressful for me) it turns out that being happy to be home is OK too.

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Working mother paradox

I’ve been irrationally angry lately. The special needs playgroup (which is a prelude to pre-school) that Lil Z has attended for the past two years has suddenly decided to change the day it meets from Tuesday to Wednesday. End of discussion.

Why does this make me irrationally angry? Well, because two years ago, when we joined the playgroup, I changed my work schedule to be able to attend on  Tuesdays. And I changed her therapy appointments so that we could attend playgroup in the morning and therapy in the afternoon, all on my day off. And to make matters worse, we can’t change therapy from Tuesday to Wednesday because Lil Z’s therapist doesn’t work on Wednesdays. Not to mention that now is not a good time to raise the topic of changing working days with my company.

So, what do I do?

In the special needs world, there seems to be an assumption that one parent (usually the mother) is staying home to care for the child full-time and is more or less available on demand. Which is crazy because if there are families who need a double income, it is families of children with special needs.

But being the mother of a child with special needs doesn’t seem to be compatible with normal employment. Remember my previous post where I calculated that in 2013, Lil Z had an average of 1.7 appointments per week (excluding playgroup)? What that figure fails to mention is that very few of those appointments are scheduled at my leisure. All hospital appointments are scheduled based on when Lil Z’s doctors hold clinic and what appointment is available at the time. Woe betide anyone who can’t make it to the appointment you’re given, as that means you go to the end of the queue and usually have to wait another 3 months to see the doctor.

Therapists are slightly more accomodating, but not much. With FECS, I’m allowed to suggest a day that is convenient, but have little control over the time – or the number of appointments we’re given in a term. Our private physio is in such great demand that it is nearly impossible to get a set appointment on the same day and time – I’ve actually got Lil Z booked in through 2014 with the physio, just to make sure we get appointments.

I should stop at this point and say that I know I’m lucky. I’ve always had good carers for Lil Z and our current au pair is no exception. In fact, I’ve decided to leave the private therapy sessions to the au pair for the most part. So, although Lil Z is likely to have an even higher average appointments per week score this year, it won’t be just on me…

But that said, I can’t outsource it all. In fact, I can’t outsource a lot of it. And it isn’t because I’m a control freak. It is because I am the one that holds Lil Z’s institutional knowledge.

Allow me to explain my idea of institutional knowledge. I’m stealing it from business terminology, which means the knowledge that long-serving employees have of how a company works, how to get things done, what has succeeded and failed in the past, and relationships with clients and colleagues. For Lil Z, I use the term to mean her narrative, the details of her care combined with her abilities, her progress (and regress) and the vision QB and I have for her future. It is everything from her Keppra dosage to our expectation that she will walk one day (and how best to get her to that point, what will motivate her and how that Keppra dosage will help or hinder).

QB and I spend time discussing our vision for her future. A lot of that has been helped by our membership in a great organisation called Mamre that really is committed to (amongst other things) imagining and striving for a better future for people with special needs. In fact, in one of our Mamre workshops, QB and I made a “vision board” for Lil Z and it remains on display in our home office (and has also featured in a number of discussions). Although we still don’t have a clear vision of the future for Lil Z (but who could have a clear vision of the future for someone who is only 2 1/2?) we know what we want for her and are working towards those objectives. We really do give it thought.

Big picture aside, however, there is a lot of groundwork to be done. And it needs to be done by Lil Z’s parents – not a carer. And since we can’t both spend our days taking time off to attend appointments, do research and make phone calls, and since QB earns considerably more than I do and since I’m the one who works part time in order to spend more time with Lil Z, I’m the one who does it. So, I hold Lil Z’s institutional knowledge.

In the business world, it is a problem with long-serving employees leave because they take institutional knowledge with them – knowledge that can’t be replaced simply by replacing the person. In the Lil Z sense, this means that I can’t entrust all of the care and appointments and discussions to Lil Z’s carer, because the carer isn’t going to be there forever.

Add to this the complexity that the information about how to get Lil Z to her desired objectives is not readily available. I never would have heard about special school playgroups if another mother (that I met at a sleep clinic) hadn’t told me about it. We might never had been referred to FECS if Lil Z hadn’t spent a week in hospital after her first seizure, during which time I met the RCH OT and physio, who initially saw Lil Z and later referred her to them. Nor would I have known to ask for an assessment with the cerebral palsy clinic (if only to rule out CP) if they hadn’t suggested it.

What I’m trying to show is that there is no “one stop shop” for information. No one gives you a definitive guide – or even steers you in the right direction – when you have a child diagnosed with a disability. You’re left to find it all out for yourself.

At the moment, my two best sources of information are Lil Z’s FECS therapists and the other mums at playgroup. That is closely followed by a small handful of support groups that I’ve found on Facebook and also met in “real life”. But if I don’t attend playgroup or FECS therapy or do my online research, then my knowledge will be limited and that, ultimately, will limit Lil Z.

So, here I am, stuck in the working mother paradox. Unable to dedicate myself to either caring for Lil Z or building my career. The best I can do is to schedule my life as carefully as I can. So, changing that playgroup day, it really messed up my schedule.

What will I do?

I’ll cope. I’ll figure out a way. But that doesn’t mean I have to be happy about it.

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A small victory

If I had a penny for every good intention I’ve had that I never actually managed to do anything about, I’d be a rich woman. And, without going into details, the past couple weeks have been tough. Very tough. So, it was good that I was able to put one of my good intentions into action this morning – especially since I needed a little victory in my life.

Last year, I didn’t have a conversation with Vegemite’s teacher about the fact she has a special needs sibling. At first, it didnt’ really cross my mind. And by the time I thought that I probably should have said something, it was just too late. Lil Z is  a regular on the school run, so no doubt that the teacher knew something, but we never raised it with her, so she never raised it with us.

This year, I knew I had to do something different. So, this morning I had a meeting with Vegemite’s new teacher. I’d prepared a little bit – mainly printing off some materials from Siblings Australia, which very helpfully has a section specifically for teachers of children with SN siblings, and thinking about what I was going to say. I’m not nearly as good at expressing myself verbally as I am at writing it down, so I was a bit nervous about getting my point across.

In the end, it went better than I expected. We discussed Lil Z’s needs and how they affect Vegemite. I told her about how some mornings Vegemite experiences quite a bit of disruption before she reaches school. Already this year, we’ve had to pull over on the side of the road and deal with a seizure on our way to school. And my concerns that whereas previously Vegemite saw her sister’s disability only in terms of how it affected her (going to the hospital is boring, missing gymnastics because Lil Z is unwell is frustrating, etc), she is now gaining a better understanding of what it means to Lil Z, and as a result sometimes seems to worry more.

We also talked about Vegemite’s willingness to discuss her sister and how she understands Lil Z’s disabilities. I said that Vegemite currently explains Lil Z to other children by saying she has epilepsy, which she understands means she has seizures and a problem with her brain.

The teacher mentioned that next month is Epilepsy Awareness Day (the fact she knew this made me happy in itself!) and said that she is planning to discuss epilepsy with the class. She asked if Vegemite would be willing to share with the class that her sister had epilepsy and I admitted that I didn’t know. She said that she wouldn’t put Vegemite on the spot, but that she would ask if anyone in the class knew someone with epilepsy during their discussion.

We also talked about how I try to reinforce with Vegemite that everyone is different and that is a good thing. Her teacher said this ties in well with their current focus in religion class (thank you God, for making me ME).

I left it there, as I don’t want to make Lil Z a major issue at Vegemite’s school. It was a good meeting and I was really pleased with the discussion and the fact that Vegemite’s teacher seemed to really on board with it all.

When I headed out of the classroom, Vegemite intercepted us and wanted to push Lil Z around the playground. Before I knew it, a whole flock of little girls had surrounded Lil Z and were giving her a tour of the playground.

So, my little victory was compounded by being reminded that despite all the stress and worry, Vegemite loves her sister, and equally importantly is proud of her. And the fact she is expressing her pride and love with her new friends is certainly a victory.

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