How to take Christmas Card Photos of your special needs child, a toddler & an infant

Step 1. Don’t.

Step 2. Pour yourself an alcoholic beverage and give yourself a high 5 because you know Christmas cards go in the bin anyway.

OR If you are one of those people that like to attempt ridiculous Pinterest projects (like me) then read on:

You will need:
• A special needs child, around 7 years old. Bonus points for not being able to stand or sit properly, or stay still, no attention span, and reaction speeds varying from 5 to 30 seconds. Definitely no smiling on cue.
• A toddler
• A 2 month old baby

Step 1. Don’t be silly, make sure you’ve got other people helping you, not that it will make a difference in the end. Find a time where all 3 are together and relatively happy. lol whatever just go to the next step.
Step 2. Dress your kids in something ‘Christmassy’. Bonus points for Santa Hats and other things that will get pulled off or fall off every 2 seconds.
Step 3.  Make sure the baby then immediately falls asleep for 3 hours. At any other time this would be amazing, but not right now that you are running out of natural daylight.
Step 4. Given their limited movement and posing capabilities, you think a laying down pose might be nice. Set up a white sheet on the ground for that ‘White Christmas’ feel, even though you are in Australia and that makes zero sense.
Step 5.  Take about 500 photos making sure they never all look at the camera at the same time and they can’t lay still so the composition is awful.

Step 6. This isn’t working out so decide to move to the couch. Awkwardly prop the baby up on one side. Put the toddler in the middle so the baby doesn’t get crushed by the 7 year old. Instead the toddler gets crushed by the 7 year old and isn’t too happy about it. Take another 500 photos.

Step 7. Look at all the photos on your computer and discover they are ALL grainy from lack of light because the baby slept too long.
Step 8. Pour yourself 6 alcoholic beverages and don’t high 5 yourself because that was all a big waste of time.
Step 9. Over the next week take new photos of each of them separately and wonder why you didn’t do that in the first place.
Step 10. Order your cards and remember that they just go in the bin anyway.

MERRY CHRISTMAS lol.

all the lolz

You know what is awesome?

Laughing.

You know what is REALLY awesome?

Hours of non stop genuine laughing.

Pomps has this cute laugh that he punctuates with really loud squeals of delight and he will do it continuously for hours, days, weeks. Really.

I don’t even know what he’s laughing at.

TV is off? lolz (he actually does this face)

TV is on? Hilarious

Staring into space? stop, my stomach is hurting from the lolz

Just woke up? ROFL (ROBL? rolling on BED laughing?)

It’s infectious! we could start one of those Laughing Therapy groups 😀

But you know what is NOT awesome?

Waking up at 3am and laughing. Then being moved into the living room because of the loud laughing, sitting in the pitch black STILL laughing REALLY loud and then staying awake and squealing at the TV until it’s time to go to school.

Pomps was the one laughing by the way, not me. I was crying. Ok, I wasn’t crying I was sleeping, hubby took care of all that woohoo winning!! I could still hear the squealing from our bedroom though.

Well, it’s all still a little bit awesome. Even though I don’t know exactly what you’re thinking at least I know you’re happy.

Laugh away buddy.

3 wheels

Never ones to take the easy route, we recently had another baby. Pomps has a little sister. My parents came to stay and help out for the first 2 weeks and my husband also stepped up his game and so I’ve been able to rest and recover.

But now the time has come for me to get it together and attempt to get back to regular life. An appointment to get Pomps fitted for a new Second Skin splint came up, so I decided to take the plunge.

Despite the fact its a logistical nightmare (we’re nearly 2 years into our quest to get funding for a wheelchair van, still no dice), I wasn’t ready to brave the world with 3 children in tow. Mali was to stay at home with his Dad, and I would take out Pomps and baby.

So I arrive at the appointment on time and no children are crying. Winning so far. Then I unload the double pram, which hasn’t had a workout in quite a while. I start setting it up and…

IT’S MISSING A WHEEL FFS.

Ok so, options:
1. Panic attack and cry
2. Wrap baby to myself and attempt to help Pomps walk in
3. Put them in the stupid pram anyway and pretend everything is normal.

Option 3 seems to eerily resemble my life anyway so I roll with it, well as well as you can roll with only 3 wheels.

I managed to get through that appointment with no one knowing about the wheel except for our Physio, and thats because I told her and asked her to push the pram while I carried baby. There was also a “POOsplosion” by baby, but Pomps overall thought the appointment was fantastic and laughed throughout, so I guess those even each other out.

Just incase you were wondering, we went back to the original black suit with the Spiderman design on the front. Last year we switched to Superman which was cool, but now the only superhero design left was Batman. Pffft whatever Batman. No.

Anyway, like I said, being a sucker for punishment, I then thought
“Well hey, let’s push our happy-baby-missing-wheel-luck and take Pomps to get fitted for new Piedro boots”.
The shoe store was a 12 minute drive (thanks iPhone Maps) from where we were and I didn’t feel like making the trek again another time, so we went.

This time the pram did not want to cooperate. I’m manouvering it across the road when a man points out to me that I am, in fact, missing a wheel.

“Thanks, I know. I’m having an awesome day” I say with a smile. LOL I’m so positive. Self High 5’s.

In the shoe store, the pram wants to keep falling down. I’m getting strange looks and happy baby time has changed to ‘hold me or I’ll cry’ time. I was told there would be many different awesome shoes to choose from, turns out there was only one ugly pair. I then also got told my baby should be wearing socks and a hat. I really love parenting advice. Please, tell me more.

Ok, I don’t want to make them sound bad. The two ladies working there were actually super lovely. One held baby almost the whole time so I could help get Pomps shoes fitted, she then encouraged me to nurse baby before we left and they later emailed me an entire catalogue of awesome shoes to choose from.

Anyway, because I’m so awesome, when we got home I DIDN’T put the pram wheel back on. So next time I took the pram out… SAME DEAL, 3 WHEELS FML.

ps. I put the wheel back on the pram now lol.

respite

Yesterday my heart broke a little.

People have been telling me for years that I need to look into respite options. That even though I suffer from Independent-I-can-do-it-all-by-myself syndrome, I actually can’t keep on trying to do it all, one day I’ll burn out.

Once, when I was in a situation that I couldn’t see a solution for, my husband said to me, “You just have to”.

Initially I hated that phrase, but to be honest, it’s the motto of my life and something I’m actually proud of. Whatever life throws at us, I have a 10 minute stress and then just deal with it.

Anyway, an information session came up for respite options at a local children’s respite home. I figured I should at least see what it was all about.

Really, my intentions were to just eat all the complimentary snacks and hug Pomps and never let him go. Thinking of putting him in a respite home, even just overnight makes me feel ill. I suppose you have a nightmare movie vision of somewhere very clinical with the children all doped up and left rocking in a corner, but the reality was the house felt like a home. It was warm and friendly with a Telethon funded playground out the back and it looked fun!

Even though I understand that I need to put on my oxygen mask before my children’s, you can’t help feeling like you’re failing. That we’ll drop him off and because I know that in his cute little (or big as I just found out) head, he knows what’s going on and he’ll feel like we’re abandoning him. Who’s going to cuddle him to sleep? Will they do that?

I recently attended an information session on the NDIS where a parent in the crowd started asking about self managed respite funding, finishing her interrogation with,
“Because there is NO WAY I’d put her in a group home”.
She practically spat the words out, right onto my crushed soul. So I did the only thing you can do, eat alll the complimentary Tim Tams until you feel better. (Hot tip: obviously food bribes are a winner with me).

But I am a planner and I like to be prepared. I know that we have a very limited support network. We don’t have many people around us who can step in and takeover if the time came. One day, for some reason, we might need someone who can look after him and I want him to have somewhere that he feels comfortable and happy and so we need to start this process now.

I spent the day feeling sick. I tried to prepare Pomps by constantly telling him he was going to a fun sleepover and he was going to make new friends. I think I was just trying to make myself feel better.

And you know what, we got there and he was so freakin happy! He was squealing and bashing toys and trying to walk around. I don’t think he cared if I was there or not!

I called up an hour or 2 in and they were like, “Yeah he’s great! He even ate all his veges!”

NOODLE BOY ate his VEGES! (and he also has lost the mohawk, he’s a cool big boy now)

Well maybe this won’t be so bad after all. Now if I could just get some respite from his brother lol

procrastination

Being the Queen of Procrastination and seeing as it is now March, I thought this would be a great time to write my New Years Goals for Pompy. That, and this teachers and therapists are asking for them. Potato, tomato *shrugs*

Therapy wise, our goals have been the same for quite a while.

1. Walking
2. Independent eating/drinking.

Whenever his epilepsy isn’t being a total A-hole, we’re actually plodding along alright! Around December, occasionally he would fall under the hypnosis of Thomas the Tank Engine or perhaps the rotating fan blades and not even realise that he was free standing for up to 20 seconds!!

My excitement level pretty much matched this:

This was the moment he saw a real life size, moving Thomas the Tank Engine. Best face ever.

We’ve always been fairly blessed with services, equipment and assistance practically falling into our lap, but this year, I thought I might try bring proactive. Might have something to do with the AWESOME Nespresso Coffee Machine my husband just got me as a belated Christmas present magically giving me extra energy. As you can see my husband is also a Master Procrastinator. I seriously do not know how ANYTHING ever gets done in our house.

So anyway, here are some things we’d like to achieve this year:

1. Wheels for Hope
This is an organisation that helps families with special needs get vehicles. We currently don’t own a car and are having to hire the smallest car imaginable. As a family we often need to transport 2 adults, 2 kids in car seats, the 3 older sisters, and either one or a combination of the following – Big Kimba Stroller, Double Pram, Maywalker (this actually doesn’t even fit in our car at all) and soon, a wheelchair. It’s actually ridiculous and trying to lift Pompy and all these things into this tiny car is breaking my back. I have developed my car packing skills to level PUZZLEMASTER 1000.

I keep trying to do that “The Secret” positive-thinking-stick-pictures-of-what-you-want-on-a-board-and-you-will-get-it-bulls**t and it turns out, it actually is bulls**t lol. Every day I open my front door and there is NEVER a 7 seater Ford Territory or a wheel chair conversion Van sitting in my carport. So whatever. Wheels for Hope it is. Good thing I got that coffee machine to help me get through the 100 page application form and copies of 50 various certificates* needed to apply.

*slight exaggeration. Feels like it though.**

**worth it for a car. So grateful.

2. Riding for the Disabled

I discovered during our iRehab therapy sessions that Pompy thinks bouncing up and down on a Peanut Ball like he’s riding a horse is HILARIOUS. Seriously, the “I just saw Thomas the Tank Engine” face comes out every time and so I decided that I was going to get him into this program. Upon talking to our OT I was informed that there is a thing called HIPPOTHERAPY. As disappointed as I was that there were no Hippos involved, I was very excited to hear about this. It basically is just therapy on a horse. The rhythmic movement, sensory output, ideally positions blah blah HORSES 😀 😀 😀 He’s gonna laugh and hopefully one day walk and I’ll cry, the end.

3. HBF Run for a Reason

Of all the things that Pompy struggles with, the thing that I absolutely hate the most, is his Epilepsy. It makes me want to scream expletives, smash things and drink myself into oblivion. Not really. Ok a little.

So this year we want to go in the HBF Run for a Reason to raise money for the Epilepsy Association of WA, because someone needs to cure this shit STAT. Ok I don’t think they work on that but they do support families with Epilepsy, and we seriously need all the support we can get.

I like to pretend that I’m fit (lol) so I’m telling myself that this will be fun, we’ll push Pomps around the track in his wheelchair and might even make up some Pompy shirts so we can be all official and pretend we do this stuff all the time. Excuse me while I find my asthma inhaler.

Speaking of Pompy shirts…

4. Pompy Shirts

Some of the things we’d like to do for Pomps require money. Money is afraid of our family and is always hiding from us so we were thinking one way to fund some of these activities might be to make up some Pompy merchandise, seeing as we kinda do that sort of thing with our side business anyway.

Who wouldn’t want to wear this guy on a shirt 😀

Look out for them being released soon. Actually I drew this picture specifically for this purpose last NOVEMBER lol so with this excellent procrastination pattern in mind, don’t bother looking out for them until like July 😦

5. Extra Therapy

After our iRehab stint last year, we were then given funding for 12 sessions of each – Physio, OT & Speech. Since attending these sessions and having so much therapy last year, I feel we really need to just dig deep and pay for him to continue this extra therapy. I’d like him to continue on with our new therapists and maybe add in extra Hydrotherapy seeing as he’s so in love with swimming.

Unfortunately this stuff is EXPENSIVE, so yeah, if anyone wants to buy a shirt if I can ever get them done then that would be most appreciated.

6. Pompy Kids Books

People keep telling me I need to turn this blog into a book… so maybe I will. Kinda. More like make some kids books but yeah, this one isn’t too high on my priority list, so we’ll see.

And finally…

7. Walking

Yes, this is always a goal, but I just wanted to put it out there. YOU CAN DO THIS POMPS!! THIS IS YOUR YEAR 😀 😀 😀 Go for gold buddy! Please. You’re too heavy now lol.

patience

So I had planned to write a nice post about our big boys first day of year one and his first time catching the bus to school… until today happened.

That’s me, well, I wish it was me. We didn’t have any junk in the house. I tried to eat a healthy, raw treat but you just can’t wallow in dates, coconut and cacao powder.

Anyway, I had just barely made it through 6 weeks of school holidays in the Perth heat with no air-conditioning by hanging on to the light at the end of the tunnel, school.

You can do it Loreta, just make it to day one. Pomps will board the bus and you’ll have 8 hours of half the children, half the crying and half the mess. Moops might even have a nap and you’ll get to SHOWER!! Oh the JOY!

And we made it. I had a relatively relaxing Monday, and then Pomps came home upset and crying more than he had been the entire holidays. I can only guess at the cause but the probability is: tired + change in routine + hours on the bus + epilepsy = no fun.

Ever tried running up escalators that are going down? That’s what its like feeding Pompy when his epilepsy is playing up. He loses all control of his mouth. He can’t chew, he can barely suck, he can’t close his lips and I’m pretty sure any swallowing that happens is actually a miracle.

This morning I’m shovelling weetbix into his face which is quickly being fashioned into a brown waterfall down his front. What is equal parts frustrating and sad, is that he wants to eat, but literally can’t. It requires immense amounts of patience to remember that he is not not using his mouth on purpose.

I then lay him on the floor to wrestle his Second Skin suit on & dress him for the day. His little brother Moops decides this is a great time to use Pompy’s head as a punching bag. Pompy is not impressed with neither his Second Skin or being punched and starts crying. He continues to cry while I drag Moops around with me outside to put both the car seats and the big stroller into the car because Moops will also cry if I am not in sight and one child crying is more than enough.

Instead of loading Pomps onto the school bus today, I had to drive him to Physio. Turns out the previous Physio passed us on to a new Physio and I had to answer the 500 standard questions you get every time you see someone new. Pompy was not impressed at all about being at Physio and cried and lay on the floor having a tantrum the whole time while the Physio kept looking at me concerned because Moops was crawling around touching toys and moving into Pompy’s kicking zone. Who would’ve thought it would be difficult to recite 5 years of medical history while consoling a tantrumming child, trying to get him to demonstrate his physical ability and watch a curious, clingy 10 month old at the same time.

I was then supposed to drive Pomps to school. As much as I wanted the break I figured my Mr Saddy Pants should probably be at home. I grab a life saving coffee on the way home and then eat half a left over lamb chop for lunch. Moops grabs the other half to suck on and devo cries if I try to take it back.

I then get to repeat the breakfast fun with lunch. Pomps excitedly chooses a Milo Snack, because they are his favourite. These happen to be my least favourite because they too, like to waterfall out of his face and all over everything. I basically poured one third of the container on his front and then gave up. He got mad because he was still hungry so I try to dodge his teeth while jamming pieces of cheese to the back of his mouth so they don’t fall out before he can swallow.

Now Moops is crying. So I take Pomps out of his highchair and sit with Moops but Pomps is still hungry. So I try and feed him sandwiches while catching him when he has drop seizures. I should probably put him back in his high chair but my back is hurting from lugging 17kgs of dead weight Pomps around all day.

By now I’m tired of Moops crying so I go to feed him. He thinks it’s a great idea to bite me. So I put him down because I can hear the fridge beeping anyway because Pompy is in there trying to get a drink. I start feeding him a choc milk but while I’m doing that he has a drop seizure and I’m not quick enough to catch him and stop him from falling on his head. So now he’s devo. Moops is also devo because I left him in the other room. He crawls to us but stops just out of my reach and CRIES AND CRIES. I have Pomps on my lap comforting him and trying to drip choc milk into his mouth and I think I’m going crazy… and its only 1pm.

I finally got Pomps happy in front of the TV, Moops has gone to sleep and I’m… writing a blog. I know Mum, I should be resting lol

ok woosah, vent over 😀

 

 

 

 

you don’t look like a cripple.

We recently acquired an ACROD Disabled Parking Permit for Pompy.

I like to high 5 him on the regular for scoring us kickass parking every time. Usually he ends up with some doughnuts as well, which are his favourite, cos you know, he really took one for the team.

So anyway, the other day we pulled up in a disabled spot. I sent his sister over to get a shopping trolley for Pompy to sit in while I got out and opened the door to get him out.

At that point I hear a voice.

“You don’t look like a cripple”.

I look up to see an old guy staring at me.

^^ eyes of rage.So I said:

“And you don’t look like an asshole, yet here we are”.

Well I wish I said that lol. I’m terrible on the spot. I knew this day would come, that someone would question me and I like to think I’d be prepared but all I could manage was “My son can’t walk”.

“What?”

“My son can’t walk, do you want to see my permit?”

He just gives me a look and waddles off, to die I assume. My husband would’ve told him to hurry up (and die that is). He’s been known to do that actually. In fact, when I found him he was mad.

“WHERE DID HE GO? TO THE PUB? I’M GONNA GO POUR HIS BEER ON HIS HEAD”

Which would’ve been funny but luckily for him we couldn’t be bothered walking all the way across the car park. We have prime parking right next to the door of the shopping centre, why waste it?  🙂

I wanted him to meet Pomps so he could feel like a total Ahole. I wanted to tell him to mind his own business.

Anyone got any good comebacks for me?

I suppose its nice someone is trying to protect our parking spots.

lol not.

a crappy friend

One of the reasons I started this blog was to help people understand why I’m such a crappy friend.

And by crappy friend I mean, 97.3% of the time, I will not make it to whatever you’ve invited me to. Ok, about 60% of that is more to do with me being an awkward social recluse rather than having a special needs son, but still.

Not only do I not leave the house but I also don’t answer your calls, check your voicemails and I take a minimum of 3 days to respond to txt’s and emails. No lie, a current screenshot of my phone would look like this:

My voicemail for a long time literally said “Hey, I’ll call you back if you’re lucky”. Apparently that is ‘rude’. I call it honest.

So anyway, I have below included a diagram of what goes on in my head when I get invited somewhere:

If your invite made it through that mess, you need to go buy a lotto ticket because that is a miracle.

As you can see it involves checking with 4 different people, ferrying kids back and forth, having a nap, and then probably declining. My husband just told me that that diagram is pretty intense, but really I couldn’t even be bothered typing everything I actually think.

And that’s just the thinking part, then I’ve got to put it all into action. That porkchop Pompy is getting HEAVY. Dude, you need to start walking already cos I feel tired just thinking bout carrying you around. Your pram is also heavy and my back is sore.

If by some miracle all the stars align and baby jesus appears and I leave the house, I will then spend the whole time worrying that one or both of the boys is crying non stop, not eating (Moops) or having a seizure (Pompy).

I generally also spend the whole time feeling like I’ve burdened whoever is babysitting for me and I need to hurry back ASAP and so will probably spend the whole time checking my phone. But I still won’t answer your calls. I hate how we ignore the people we’re sitting with to talk to people who aren’t there. I just don’t like phones really. But thats a whole other topic.

I didn’t write this to make anyone feel bad about inviting me to their things, it’s actually the opposite. I want to thank those of you who haven’t given up on me. That regularly invite us to everything big and small and even though we bail out nearly every time, they still keep trying and there is nothing but love. And especially, those who try to accommodate me and my Pomps & now my Moops! You guys are the best. Those times that I get out of the house and catch up with friends are always so worth it, much needed breaks. For a little bit. And then I get tired and want to go home cos I’m not used to all this ‘socialising’ stuff.

I also hope those of you with family close by that regularly take your kids so you can go twerk or whatever is cool these days realise how blessed you are.

It is so hard to coordinate a 5 year old that can’t walk, with a 6 month old baby and usually some other kids and 5 peoples schedules and cars and money and Pompy’s up and down health status, but please keep trying! Hell, it took me 5 months to write this new blog post and I don’t even have to leave the house for that!!

 

insanity

So, it’s been a while since I’ve blogged… and that’s because I’ve spent the last 9 months questioning my sanity… and then I pushed out our second baby.

Our Pompy now has a little brother!

Holding this little guy absolutely confirmed that I am insane…ly happy! With a good dose of actual insane thrown in there, but to be honest, I’ve been questioning that for years.

I had always imagined having more than one child. Three is my number, probably because that’s how many kids my parents had. But when you have a special needs child, everything changes and deciding on trying for another one became a big deal.

Once, a woman I didn’t know rudely said to me, “You would think having a disabled kid would put you off another one”. And, it does, well it makes you think about it that’s for sure. Which is why it took us 4 years of consideration and talking to specialists because it was a very serious decision that we didn’t take lightly and quite frankly caused me a lot of worry, so there is no need to be rude to me thank you. I tend to meet all the rude ladies it seems, what’s with that?

And I get it, there will be people who probably think we were being selfish, but as another awesome woman I met at Pompy’s school, who has an ASD child and went on to have 2 more children said, “Fuck ’em”. Maybe not the most eloquent of advice, but sound none the less.

What made it harder is that the doctors really couldn’t tell us anything helpful. Pompy is undiagnosed and all genetic testing comes back normal, plus there is no one else in the family like Pompy, so what could they test for? We were pretty much told, if you want to go for it, cross your fingers and hope for the best.

And so I spent a lot of time thinking. I knew families with multiple disabled children, but I also knew many families where only one of their kids were special needs with the rest having no problems, myself being from one of those families. But still, I had to know that I would be able to cope with Pompy plus another who potentially could have the same problems. Things eventually seemed to fall in our favour, and Pompy would be full time at school giving me time to focus on the new arrival. So we crossed our fingers and went for it. We did all the testing you could do along the way and everything was looking great.

Because of the enormity of it all, I didn’t feel inclined to share our news with the world. We told immediate family & close friends and unless you happened to run into me and notice that I’d morphed into a whale you never would’ve known.

 

You know those people you see on Facebook that update their status hourly about every single thing to do with their pregnancy and baby? Ultrasound pics, Feeling tired, s/he kicked, craving random food, weekly trackers and how many times they’ve vomited? Yeah, that’s not me. It actually became a bit of a game to me to only have photos of myself that hid or obscured my bump. I had a number or people that knew and constantly complained about it, which really, just fuelled me to hide it further. I love you guys, and you probably didn’t know what I was going through, but if I want to keep it a secret, that’s my right and you can eat a dick. Lol just joking, that’s a bit extreme. Please respect my decision is what I meant.

I guess I was partly trying to avoid judgement, i.e. from the rude lady, but also I didn’t want to get too excited only to have it publicly fall down around me. As you may know, I’m not a fan of pity. We eventually did announce it to the facebook world with a photo, but that was 2 weeks off giving birth.

Going into labour I was nervous. Well actually, I was pretty good right up until they decided to induce me early. “Oh hey you’re waters have broken but you’re not having contractions, normally we’d keep you overnight to see if you go into labour on your own and then induce you tomorrow but we’re pretty busy in here tomorrow, wanna have your baby today?” okayyyy. My parents were present for Pompy’s birth and they regularly like to remind me that my labour was long and difficult, like that’s what caused Pompy’s problems, and although I disagree, that stuff weighs on your mind when you’re about to push out another one.

And so, Inducing drip in at 1pm, 4cm dilated at 3pm and another 5 drug free excruciating hours later, Pompy had a little brother.

He opened his eyes, and there was no squint. As the paediatrician listened to his heart I badgered him, is there a murmur??? and there wasn’t. And although you can’t really be certain until he gets a little older, we sighed with relief at our healthy little boy.

pompy, every time.

when Pompy was much smaller, I found myself constantly saying to our therapists ‘I swear, he does that for me at home!!’ … oh how the tides have turned…

And he generally does all these things immediately after I’ve told the therapist that I’ve been having trouble getting him to do anything.

Thanks Pompy.