Choosing my mummy style

A lot of special needs mummy blogs reflect on how they are so upset that they didn’t get the chance to be the mother that they wanted to be. That the requirements of being the special needs parent changes you and robs you from the things that you really wanted to be.

Well I call foul. If you are a person who will schedule your child, or if you are a crafty person or if you are a person who sits on the couch and eats chips all day, then that is the parent you will be, special needs or not. I am learning this as Owen develops and I am reflecting on it now.

I look at Grace and she is the most scheduled child I have met. She has appointments before and after school. She has around an hour a day at home where she doesn’t have to be doing something. At first I thought that it was the crazy way that special needs kiddos had to be. But now I am seeing that is how I am.

With Grace so busy and me having this awesome opportunity to be a stay at home mum I am now starting to schedule Owen. It started slowly. Just an innocent swimming lesson, under the guise of daddy and son time. Now I have added time at a kids gym (like Gymberoo in Australia). Now I am looking at music classes and even potentially a language (Spanish would be very useful). Does he need all this scheduled time? Absolutely not. Do I need it? Absolutely. I am not a crafty person, I am not a teacher, I don’t know how to even begin to offer these opportunities at home. So I outsource ideas and pay others to assist in stimulating my child.

In the future I am going to have to appreciate that these are the decisions that I chose to make. No one will ever be 100% correct in their parenting choices, but you do have to appreciate that you do get to choose. No matter the neurological status of your child. For better or worse.

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Running in Texas in June 

Or, Mission Impossible: Losing weight in Texas  (where bigger is better)

I put on a lot of weight while pregnant with Owen. I think the stress of coping with Grace, moving countries and giving birth in a foreign country got to me, well it increased my desire for comfort in food. It was indeed comforting and I really enjoyed guilt free chocolate. However now as I look in the mirror I see that my arms are huge, that things are just a tad too jiggley for my liking. I understand you put on weight while pregnant, but not on your arms. Perhaps I was too indulgent. 

Anyhoo. So now I am pushing myself to lose those extra kilos/pounds, with the goal of having no maternity clothing when we visit New York. In four weeks. And this is how I have come to running here in Texas. 

I am putting it out there that running here is marginally better than running in PNG. At least here there are trees and you can escape the sun. Running in PNG was hot under the sun but not too bad when overcast. 

Running here is much hotter than I imagined. 

Picture Melbourne in November, when it is still humid from Spring but already has the heat of summer behind it. Now turn up the temperature to a guaranteed 30degrees, add about 60% more humidity and you have a rough gauge. 

As you run along the wooded trail you think it would be good to get out of the sun and into the shade. But the problem is that it acts as a vacuum and all the air is sucked out and you are now running and you don’t know if you are covered in sweat or the air has left some residue on you. The lack of air I can only compare to the path that runs behind the sand dunes at the beach. The trees blocking the sea breeze and the sand dune reflecting the heat of the sand back at you. 

But it’s not all bad. Sometimes you can fit your run in before a tropical storm hits. Sometimes freaky type-A people with ironman competitor shirts run by and try and encourage you to run with them (haha! Literally had me rolling along and laughing when that happened). It is pretty here, it is tree lined and plenty of wild flowers are out. You dodge more squirrels and birds than you do people with roving dogs. 

And I appreciate the ability to have 30minutes on my own out of the house. 

 

A picture tells of a thousand hours

  

This picture is nothing special on first glance. But if you look carefully, it can tell you of all the hours Grace has worked, screamed, fussed, talked her way out of and sometimes cooperated. 

You also need to understand a little more about reflexes to appreciate this picture. See how Grace’s hands are either side of her shoulders, nice and even? Well that hasn’t come easy. Part of Grace’s CP is that she has an overly strong ATNR. The ATNR is one of those newborn reflects that integrates about 2-3 months into life. Once it’s gone you can do cool things like suck your thumb, clap your hands or even walk with your hands by your side. Most people aren’t aware of it (nor should they be unless they are a Physio or doctor type). What it forces on the child is that every time they put their head in one direction the hand they have turned to will shoot out. It looks like the child is taking an archery stance, and this reflex can be referred to as the archer or fencer. What all that means for Grace is that when she is on her tummy one arm will be straight, making it hard to army crawl or even bring her head up.  If she does get up on her hands the one straight arm will push her and she will topple over. Then when she creeps on her belly she goes round in circles as the dominant side keeps getting activated bSo to see her with two hands and arms in a lovely position like this is fan-freakin-tastic. 

You might note Grace’s cute little pixie hair cut. This is not a mother initiated style, it comes again from Grace and her reflexes. This is from the grasp reflex. You see it on babies as they cling to your finger or even some Facebook posts where they have a baby hanging from a washing line. That is how strong the grasp is. While Grace is on her back or even her tummy, she will try and move or feel around and she will invariably find her hair. She will clamp down on that tiny tuft of hair and then suddenly realize that it is attached to her own head. She will then pull will all of the muscles that she can and finally that tuft of hair will be free. Well, free of her head and a little bald spot will remain. As it is her hair takes forever to grow. I blame the medications she took for her seizures and now the diet that she is on. Neither are positive for hair growth. I can’t recall the last time she had a haircut – I think I tried to even out the nape and once I gave her a cut so bad she looked like a cancer survivor. 

The other thing is that Grace suffered reflux as a baby. Anyone who has been a parent to a child with reflux will understand this, these kids have no desire to be on their belly. It just increases their discomfort and pain. Grace has hated being on her tummy since before time. She hates the wedge that is meant to help take some of the strain away and build her arm strength. The only thing we could do to build back strength was rolling on an exercise ball. So she hasn’t built up her back as well as other kids. Which makes holding her head up like this in the picture a lot of hard work. 

I don’t know what is the exact reason that she has suddenly taken to enjoying tummy time or being as active as she is. But something is working at the moment. All I can hope for is that this little break through continues and lots of new skills keep on coming. 

Settling in

Well it has been some time since updating you all on what we are up to. It wasn’t an intentional lack of communication it has just taken us this long. Moving countries is hard enough, throw in having a baby and having one with special needs and things are going to take time. I am learning slowly to make my peace with that. 

So how are we doing? We have all our stuff  now, all four shipments! It doesn’t all fit into our new home, we are lacking in places to store all of it – amazing to think we have gone from a two bedroom apartment where everything fit to a five bedroom house that feels too small! A trip to ikea should solve our issue, but that too will have to be planned. 

Grace has now been registered to start school in the Fall (August). We still haven’t 100% decided on whether to go special needs or inclusion but we will before then. I hope. It has a life long impact for her so we are taking it very seriously. Grace has been working with a great speechie who really understands that Grace is quite bright. She had Grace tested to understand where her level of understanding actually is. It was quite remarkable Tobias what she did was present Grace with a flip chart that was landscape and about 1/3 of an a4 page. On each page was 4 pictures. The speechie would ask Grace to point to the dog or the circle or the place where you would sleep. And Grace would then move her arms to touch the answer. 

The remarkable thing about this was that she could see the images. It was lit up or in high contrast or anything special. It was just pictures on a page. She could differentiate between like objects, so the clock was next to a wheel but she knew which was the clock and she knew body parts when they were all the same skin tone colour and quite indistinguishable. This from someone classed as blind. Not only could she see the pictures but she moved her body with a purpose and selected an answer. Not only that, but she kept going for about 45 minutes. A three year old with that long an attention span? 

It took her 45 minutes before she got to a point where she had six wrong answers in a row. She only had two or so before that and they were quite tricky like, which picture is the kids playing baseball – bit of a cultural difference there. So we could rule out that she was guessing and we could rule out lucky as she would have answered around 30-40 questions. AMAZING. 

So our focus in speech has changed from eating to increasing her vocabulary and use of a speech device (set up like her book). She is already vocalizing more and she is also less frustrated as we have begun to talk to her less like a baby and more like the kiddo she is becoming. 

I have gone crazy now and attempting to teach her to read first words and sight words. Playing with the harder stuff she seems to enjoy, she is growing in confidence and desire. It’s a really great transition to watch. She is hungry for this knowledge and certainly proving she is capable!

Our boy Owen is busy being adorable and very sweet. He loves to have time by himself playing with the toys on the mat. He is cooing and smiling like a real chatterbox. He just had his 2 month vaccines and is passed out on my lap as I type this update. I think this weekend I will move him into his own room (the delay has been his room is upstairs and I don’t want to run up and down all night!). 

The storms I hear have made the news in Australia, as they should. It has been CRAZY here. Thunderstorms and lightning so much it shakes the house, rain so much that on the main freeway they had a mini tsunami that wiped out heaps of cars and pretty much no one could get to work. I marvel at the way kids sleep through the storms, you have to tiptoe past the bedroom but a thunderstorm is ok. Go figure. 

I will leave my griping about the American medical system to another day, I am frustrated to say the least it is a daily battle that you have to prove your childs needs. I thought it was going to be easier than this is the only thing I will say. 

Hope all is well wherever you are and don’t forget to stay in touch xx

Settling in

We have been here now for three weeks I think. It’s all running together a bit, and February is a short month (so it throws your perception of time right out the window!). What have we actually managed to achieve? Well…we got a place to live, put a couple of beds in it, stocked the fridge and cupboard, bought two new cars (which is taking some psychological adjustment on my part…never wanted to be a minivan driver!), hung a TV and connected it to all manner of trashy TV, bought a coffee machine…oh celebrated our 5 year wedding anniversary, Grace’s 3rd birthday. That’s enough in 3 weeks right?  Well then pepper all that with a dose of working out the American medical system, having multiple check ups with my OBGYN, Grace met her new neurological team, organised a pediatrician (everything has to come from a referral of your pediatrician over here, so no therapy until you have it written by them, even hippotherapy!) and we found a school for Grace come this August.

I am a bit excited/nervous/anxious/excited about school for Grace. It looks great, they do therapy and cognitive stuff there all at once. The grades are different, they take 0-4 year olds in one room, then 4-8 in another and 8-12 in another. There are a few different ‘streams’ within these groups too. So there are rooms for the more high functioning and rooms for those that need more behavioural assistance and so on. I am excited because I think the interaction will be fantastic for Grace, she loves being with other kids, even happy just to watch them run around and squeal, quite frankly, she loves people and it helps her to maintain head control and interest in activities.

I am nervous because I will be leaving her there. All the usual mummy leaving kids at daycare kind of emotions really, topped with a dose of ‘Will they be able to feed her?’ ‘Will she scream too much during therapy time to ruin it for the other kids?’ ‘Will they be able to use her communication book?’ ‘What will she learn?’ those kinds of things. I personally think she will love it. But I will wait and assess at the end of the term.

I am anxious because it is an hour drive from our house. If we get a bad day Grace can scream blue murder the whole way. It’s an hour on very busy freeways at 110km an hour, with on and off ramps every mile, people not using indicators and doing whatever they want, big F250s with a tray full of garbage that is spewing out debris onto the road that you get to dodge while it is raining. And Grace still screaming in the back over the top of the GPS commands so I miss the turn off, or get off to early or generally just get lost. I seemed to have narrowed down her frustration in the car to being either hungry, tired or both (hangry). Or if you drive too slow, or stop for more than 0.25 seconds. As long as these things don’t occur and I continue to sing nursery rhymes we should be fine! At the moment this will mean that I will be in the car for at least 4 hours a day, with a newborn, and Grace for 2 of those hours. We are looking into getting some assistance at home to help out with this so at least we can share the load, and also looking to utilise after-school care so Tom can do pick ups.

Excited because this is a great opportunity for her. I really look forward to seeing her develop cognitively. She has fantastic awareness and comprehension. She also has a fantastic vocabulary and a desire to use that vocabulary.

So we still have a lot to get done. We anticipate that our first shipment from Melbourne (which has all the newborn stuff in it) will arrive in 2 weeks, then we have visitors #1 coming a week after that (Alex/Granny), baby boy will arrive two weeks after that and then my mum/Oma will arrive for another 3 weeks. So a very busy next month! I think the shipment from PNG isn’t due until later in April? Very far off anyway.

Hope that all is well wherever you are, stay in touch and let us know what you are up to. We miss all of you!!

Location change

So we have now arrived in Houston. Tom did an amazing job, he pretty much carried his 30week pregnant wife and gastro sick 3 year old (along with 7 pieces of checked luggage, 3 pieces of large carry on) across the world, while being infected with man flu. It was amazing to watch!

Our flight turned into a disaster pretty much as soon as Grace started to eat. She threw up all over me and the floor. Thankfully I had put on those fantastic grey pjs and the Qantas guys were able to give me a new pair. But did I think that meant I shouldn’t feed grace? No, I tried again. Mostly because I was worried about her keystones. So we tried another meal…same result, new pjs were handed over again. I gave her some water and a cuddle…more vomit, new set of Pjs. Ok, three strikes, no more food for you girl!! So we focused on getting her to sleep, which is hard to do over those business class arm rests! Tom worked her for an hour and finally she got to sleep, poor little munchkin. She woke at breakfast, so it out her in a good time zone.

At LAX her keystones were high so we gave lemonade, as is protocol, nope, came straight out. Flight from LA to Houston she vomited again, so we knew we were in for an emergency visit. No fluids and no solids we were worried. I should mention though that as long as we weren’t trying to feed her or give her fluids she was fine. She slept, she cuddled and she was just Grace, it was kind of weird.
On landing in Houston we tried to check into a local emergency doctors but they sent us to the hospital for IV fluids…so we spent the next 3 hours in emergency with Grace as they tested her blood and administered IV fluids. We made it home and straight into bed. Other than the actual sickness of it all, it was a great way to reset our body clocks! It was very stressful and gross and sad though…

But now Grace is pretty much back to her usual self, still fighting to not eat, still smiling at silly songs and noises, still telling me to hurry up when I talk too much (with her vocalizing and her comms book).

We are moving into our new house tomorrow, I am sitting in the laundromat at the moment as we won’t have a washer or dryer until at least Friday…Tom along with our friend Matt went and picked up mattresses for us. Tomorrow I have to run around and get all the bits that go on a mattress to make it a bed, as well as maybe something to sit on…or something to eat off of!

It has been a very full on week. Tom informs me his new work site is fantastic and state of the art, his colleagues are very lovely and we have bumped into a few PNG people already (that was a bit sooner than we thought!), and we have caught up with old friends too.

Today I also checked out a potential school for Grace. It seemed pretty good, I liked that it was ‘all inclusive’. By that I mean you get your cognitive academic learning and you also get your OT, PT, and speech in the one place. I am only worried that it may not be cognitively challenging for Grace enough. This school was a specific special needs school, which comes with it’s pros, but also with it’s cons. I really want Grace to start something though as I feel she gets bored with the minimal stuff that I know how to do, and let’s face it, your mum can only be fun for some of the time 😉 Grace would greatly benefit from all the social interaction and the daily challenge of learning though, and that’s what excites me in getting her into school. Anyway, we still have some more investigation to do on where she would gain the best inputs. I still have to find all the extra things as well, horse riding, swimming, Feldenkrais, and any other activities that she would benefit from that assist her physically and she enjoys.

Let’s see, anything else I should update you guys on? Oh, the weather is amazing. First it was freezing, and now I am walking around in a T-shirt! We have had three very beautiful days, and I have been promised that in a month it will be like this more often than not.

The house we are moving into has a pool, two bedrooms downstairs and three upstairs – plenty of room for all those people who promised to visit! We are laughing that we are in such a big house and will probably only use it like a two bedroom apartment. We won’t have any of our stuff from Australia or PNG for at least a month, so we will have to learn to live in a Buddhist manner.

Other than all that busyness of moving country and resettling we are well and trying to eat well. Hope you all are too!!

Reflection

My intial joy of getting to through the birth certificate process I have found was a little premature. We returned for the pick up only to be asked a question (which was on the actual form) and then informed to come back next week.  Oh well, luckily our initial move date of the 15th fell through!
This week we hopefully have our own visa interview and preparation for departure.  We have had some fantastic support in getting some things set up in the states already. Doctors for me and Grace, school for Grace (so so so excited about that one, 1:1 student to teacher if required!). Will hopefully have someone to help with housing soon and then we are pretty set I feel.
But as I went for my mandatory 30min walk (to ensure low blood pressure, which I am checking daily this time) I couldn’t help but feel how much I am going to miss this place. I am not going to miss having to be a split family, or the poor support for Grace or being away from family and friends but I am going to miss how easy our expat life was here.
We have two ladies who come and clean, every day. They do everything every day. The stuff they sweep off of our floor daily is feral. How will I find the time to sweep every day let alone mop? We have a nanny for Grace which means when we are out being social I am able to sit and talk with the parents or even to interact with Grace on a fun level while she is ‘managed’. Or even able to take a photo of Grace – I seem to run out of hands and photos fall to the bottom of the list. It also means if i need time out from therapy or Grace it is easy. We have someone who drives us in a car we don’t have to maintain.  The weather generally means you can swim whenever you want (except for the last few weeks where we have finally had a wet season).
Above all, the lifestyle here is so easy. Everything is so casual, people are at home with the kids so we are all able to catch up whenever we get a bit bored. The community is pretty tight and friendly.
Grace has some lovely little friends here too. I ask her if she wants to go see one and she does her little excited dance, the one she normally saves for when we ask if she wants water or if she wants Lisa. It’s pretty darn cute.

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A little reading time

Everything else here is going well. The little inutero boy is growing and making me massive. I also believe he is aiming to be in a football based sport the way he has been kicking my internal organs. The pregnancy continues to give me strange dreams, much to our amusement.
Should have an update about the date of departure soon for you all, and then you can all get your visiting plans sorted too 😉