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HELLO! I’m a human

While this blog focuses on Sol and his superpower, dyspraxia, there are events and interactions in Sol’s daily life that also make me think about what it means to be human on a wider scale.

After a wonderful month in Bali, resting and connecting with my kids for their summer break, I observed the following scenario multiple times.

SOL to fellow human of indiscriminate age: “Hello!”

Fellow Human to Sol: …………………….. (that’s silence, as in no response – no hello, no hi, just a stare)

SOL: “Hello!”

Fellow Human turns away.

I’ve paused from writing here for a moment to collect my emotions on what I’ve just written because despite the fact this was a few weeks back, thinking about it leaves me with a mash up of feeling. And my key questions are:

When did we stop saying HELLO to one another?

If another stranger (child or adult) said HELLO to you, do you say HELLO back?

Are your initial thoughts “That’s weird! A complete stranger just said HELLO to me?

So in the context of Sol’s dyspraxia, he hasn’t mastered “reading” human emotions or body language or “learnt” to be shy and not to interact with strangers. (Note to self, need to talk to him about “stranger danger”). He completely understands when someone is displeased or angry and seems to experience strong emotion from this. The paradox of a highly sensitive child who struggles to master the social “norms”.

Sol will enter an environment and assume that everyone is good and they are waiting to see him/play with him. He will walk up to any child and say “Hello!”, not “Hi!, a confident boisterous “Hello!”. Nine out of ten children from the age of 5 years and above will ignore Sol or walk away. And the one child that responds positively ends up playing with him for hours. Eight out of ten adults will also not respond to Sol’s greeting.

When did we stop saying “Hello”? I only have my personal thoughts on this and I’m assuming that there is a certain level of inappropriateness to starting up a conversation with a complete stranger. So here is when I think I might not say “Hello” to another human:

  • Walking in a dark alley and man approaches me.
  • Sitting in a bar waiting for my friend and man sits next to me.
  • Standing in the mosh pit at a concert with sweaty humans pushed up against me.

In the interests of actually finishing this blog post, I have to move on as I found it really hard to think of anymore, but if you know of some examples, please leave comments!

Here are some examples of me initiating conversation with strangers EVERY DAY

  • Every time I teach a fitness class, I will walk up to the new person in the class and say “Hello”.
  • I say Hello to every service person – cafe, petrol pump human, receptionist, immigration officer – everyone.

Instead of blaming Sol’s friendliness on his inability to conform with social norms, I’m going to blame it on genetics – he got it from me! And I also don’t care when fellow humans don’t respond back. I don’t start thinking “What’s wrong with me? Why don’t they like me?”. I carry on with my day, as happy as Larry – yeah, who is Larry anyway?

And I search Sol’s face to see if he is sad or hurt by the lack of response and NOPE, he moves on! Searching out the next human that will connect with him and inevitably end up having a great conversation or some decent adventure in the playground.

To give more transparency to how dyspraxia DOES in fact affect social interaction within what we consider normal, here are the examples:

  • Dislikes playing sports with other kids. Dyspraxia is primarily a motor co-ordination issue and therefore physical activity and coordinating the body to learn new skills is more challenging for people with dyspraxia. Sol has been very active and in physical therapy since he was a baby so he’s doing pretty well here and right now, he doesn’t shy away from sports with kids.
  • Struggle to pay attention to the point of being diagnosed with ADHD. Dyspraxia affects “processing” – ordering your thoughts. This affects someone with dyspraxia when they need to remember the order of events or tasks. This can be managed by making lists, notes and lots of preparation.
  • Difficult to understand – as dyspraxia affects the coordination of the mouth, words sometimes sound muffled or unclear. For children, this sets them up for ridicule as they “sound” different. Sol has had speech therapy for 4 years and while his pronunciation can occasionally be challenged, he’s doing pretty well. Volume and pitch can also be affected.
  • Seems immature – children with dyspraxia tend to lag behind on developing appropriate social “norms” (I fucking hate that word now). But it all works out in the wash. Either they become more normal……..or they go on to be the next Harry Potter!
  • Is often anxious – as they need to make more decisions, this can raise their levels of anxiety. I’m not seeing this in Sol at all and I believe this might be in part to having him home schooled for a year.
  • Dyspraxia is NOT an intellectual disability.

I appreciate that the world has Extroverts and Introverts and that I have a higher chance of a naturally Extroverted person responding than an Introverted person. I can accept this. But I had noticed that more and more, we are using our phones to “hide” and therefore shut down any chance of connecting with another human. While we are “connected”, we are not. While I’m connected to searching for the latest trend on Spanx on my handheld device, I’m disconnected from the humans sitting across from me, walking past me, from making any eye contact, from starting a conversation, from potentially having a life changing moment with another human.

So my challenge to you, in the interests of connecting with another human that you don’t already know, is to say “Hello” to a complete random stranger. I recommend that you smile at the same time so they know it’s them you are greeting. The world needs more “HELLO” givers. Truly!

Screentime – the iPad debate

OK, it’s been a good 6 months between blog posts and a lot has happened – 90% good. Sol is thriving in his learning. I don’t have any quantitative comparisons with other 6 year old boys on “how much” Sol is thriving but I do know this:

  • He asks when Ms Rachel is coming every day – Rachel is Sol’s homeschool tutor and an angel sent from heaven. I now have a daily visual of what an angel looks like.
  • He can sit and focus on ONE task for 20-30 mins. Granted that the average concentration span for an adult is 20mins, I think he might be killing it.
  • He can read and spell – the words are simple and the spelling is sometimes wrong but the understanding is strong.
  • With dyspraxia, it’s really hard to hold a pencil and write in a straight line – Sol is persistent and doesn’t give up. When he has to write about Lego, he will not stop until he has finished.
  • He understands basic addition – if I have 3 Power Rangers and I buy 2 more Power Rangers, how many are there? Sol says “You’re a damn lucky kid cos you’ve got the whole set! There are 5!” I actually asked him that cos I didn’t know myself.
  • He might sit up in his room for 30mins reading to himself on his bed. He’s not really reading the hard words but I know the idea of reading a story to himself shows me that he is developing a love for books, stories and words. That’s cool cos I adore the written word.
  • He’s obsessed with science and experiments. He asks a lot of questions around “How, What, Why, When?” – this shows a massive curiosity for the world around him.
  • He’s an amazing artist – this is the the coolest thing as I remember Sol’s sister at 6 years old being obsessed with dance. I knew that was going to be one of her gifts/talents and that she needed to have dance in her life. She’s still dancing. Sol will draw or paint for up to 2 hours a day. I kid you not. He will look at a picture and try to copy it over and over until it’s as good as he can get it. His effort and passion are what makes me so proud of him – not the outcome. These character qualities show that when he puts his mind to something, he will be successful. We know we need to get him an art teacher – on the “to do” list.

So what I have learnt from Sol over the past 6 months – he is a right brain, highly creative, intuitive, funny, loving soul. He is a gift to this earth. Having him home schooled is the best decision for right now. I am still exploring alternative options and I am so lucky to have an incredibly supportive network of parents who share information constantly to keep us informed about positive changes in Malaysia for kids with SEN.

Right – onto the topic – my experiment. Actually, I can’t own this solely as the idea was a joint decision between Sol’s dad and I. We had both been researching the effects of screen time on the growing brain. This was more so for our daughter, a teenager, who we felt was being negatively affected by what she was seeing on her phone. Without going into details, we made some positive changes for the teen, set new boundaries and proceeded to move on to the 6-year old.

We decided that we would take away iPads and access to iPads and limit TV time to one hour around dinner time. I know! You’re scared right?? I mean – who does that? It’s digital suicide for your child – to NOT know how to play Minecraft or navigate their way around Kids YouTube and “accidentally” run into “Slappy” and “Bendy”. Now if you have even heard of those characters, you need a slap around the head if your kids are watching that shite. In short – here is what you need to know on these characters you can find on Kids YouTube – the channel where you think you have been able to protect your kids from seeing what cannot be unseen.

“Parents need to know that Bendy and the Ink Machine is a creepy adventure game for PlayStation 4, Xbox One, PC, Mac, and Nintendo Switch. Played from the first-person perspective, gamers explore a run-down cartoon studio that’s more like the creepiest place on Earth than the happiest. Using axes, machine guns, and pipes, players have to fight off ink monsters, though killing them doesn’t result in any blood or gore, just spilled ink. There are also some violent cutscenes, including one that shows someone being skewered with a sword, and another in which a character has an axe embedded in their head. Disturbing images include things jumping out at you, a character strapped to a torture device, and what resembles a Satanic ritualCommonSenseMedia.Org

Slappy is a character from the movie “Goosebumps” – he’s a talking dummy – that’s creepy. When Sol thought it might be great to dress up as Slappy for Halloween, I thought “Nope – that’s not happening” and decided it was a good time to wean him off the iPad.

So, how painful was it? I like to think of it like a break up. The longer you are in it, the longer it might take. So thinking that Sol had only just turned 6 years old, we were thinking it might take around 6 weeks to deal with

  • tantrums
  • boredom
  • listlessness
  • anxiety
  • non-stop asking for the iPad to wear us all down

The last point is the one I had to psyche myself up for cos you know how we all roll! I have stuff to do! I work full time and sometimes from home and I need to use a laptop and if I’m on my laptop and he’s not in school, what the heck is he going to do? The million dollar question! What does a 6-year old do when they can’t watch TV or their iPad? And what about when you go to a restaurant? If he doesn’t have an iPad, what is he going to do? How am I going to get any peace and quiet? And if he doesn’t whip out his iPad when he’s with other kids that have them, is he going to be a social pariah? I’ll answer ALL of these questions now.

  1. Sol moaned for a week, JUST 7 DAYS. We stocked up on loads of paper, pens, paint, crayons, colouring books, water balloons, water toys, playdates! We hid the iPad and said it was broken. As I type this, I cannot tell you where his iPad is in the house. It’s gone! Guess what happened – he played, and played, and played some more. He has boxes upon boxes of Lego and it’s like he never played with it before – he kept building stuff, and making stuff, and creating stuff. And then when he was done with legos, he went on to drawing. He did some homework independently! And then he went off to one of his playdates, or activities.
  2. The restaurant thing – we take toys and colouring, like when I was a kid. Actually, when I was a kid, we never went to restaurants because they were “treats” that happened once every 2 months if that. So back to the crazy Nukus – We talk! And we laugh! And we have fun! And we eat properly and we chew the food! Crazy right??? And looking around the restaurant while I’m seated with my family and see that we may possibly be one of “those” families who don’t let their kids have devices at the dinner table – I’m like “haha! I know something about your kids brain that you might not!” OK, that’s probably going a bit far and the fact that I’m writing this means I want you to know about it too. Sharing is caring.
  3. And playdates with other kids who are using iPads? Sol will sit down and want to check out what they are watching and then he will get up and run away to play with THEIR toys cos he knows he won’t have to share them if they are otherwise engaged – so smart!

So, the future? I know that as school progresses, one of the best tools we can offer Sol is the ability to type. His writing will always be a challenge (from other dypraxia blogs I follow) and being able to type will allow him to keep up with the school work and meet deadlines for assignments. But that’s NOT right now. Right now, he is the happiest, little dude. The iPad sent him to a dark place, like switching off the light of creativity inside of him. The light is back on and we are going to let that human light shine, and not the dull pulsating white light of an iPad screen.

If you need the science to help you make a well-informed decision – click on the link

The effects of Screentime on a Child’s Brain

Homeschooling – so far….

I’ve just come home from a massage. Yes – the last time I came home from a massage to write my blog post “Forth Time Lucky” – that was full on – wine, tears and typing. So best be ready.

Sol has been homeschooled for 6 weeks now. I’m going to list the positives and the negatives to date:

POSITIVES

  • Sol struggled to hold a pencil or pen properly to write. Granted he is just 5 years old but without consistent OT intervention, I wasn’t sure how this would improve in a school setting. At home, Sol has a slanted writing board where he can clip on paper. He has a seat with a non-slip cushion and a foot roller that allows him to regulate his sensory processing and this means he can comfortably FOCUS on trying to write with the correct pencil grip. He would probably NOT have this in a group classroom at school.

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Sol can Write!

  • There are no distractions. Sol’s dyspraxia means that with lots of noise and movement, he is very easily distracted. He is not able to focus on multiple requests. He needs one request at a time. With NO distraction, Sol can execute what is asked of him. A recent social experiment – Sol and I were in a busy cafe and a good friend came up to say HI and ask Sol how he was doing. Despite the fact that Sol knows this person very well, he was not able to answer. Thirty minutes later, the cafe had cleared out somewhat and our friend came back to speak with Sol again, and then Sol commenced to communicate without distraction.
  • No distractions mean that Sol is picking up speed on areas that he was behind in when he was in a classroom setting. My concerns were that he was behind on reading and writing and in SIX WEEKS, I do not have those concerns anymore. Can I just say that this realisation is worth the anxiety of starting Sol in homeschooling. Sol is starting to read and understand sounds and language, as well as transfer this across to writing words and I couldn’t be more proud of him.
  • Sol can take “sensory breaks” as and when he needs it. There is overwhelming research and support  to show that young children cannot be expected to sit still for longer than 15 mins. Sol can easily do 15 mins or more at home but we make it part of his learning to take a break on the trampoline or some playtime outside and “recap” his lesson while he is moving. Just think about that a second – how many people do you know that use exercise or movement to help them work through an issue, problem or idea? I know I do it!
  • Sol is surrounded by teachers and specialists with his best interests in mind. We are able to curate a curriculum that puts Sol’s strengths and interests first. This means that he will not be learning anything that bores the shit out of him and things that he may not have been interested in before are now made interesting to him and in a way that he can understand and learn.
  • While I was initially hesitant that Sol would not be having school “everyday” like a neurotypical kid, this has turned out to be a blessing. Sol has 12 hours of lessons – Mondays, Wednesdays and Fridays only. This leaves Tuesdays and Thursdays to focus on his Occupational Therapy, Physical Therapy, Swimming, Playdates and other activities. Sol also has Visual Therapy twice a week and this is quite intense (separate post coming). So in a nutshell, Sol’s FULL education is well balanced and we don’t have to try and fit in all his specialised sessions after school hours when he would be way too tired to get much out of them.
  • Sol is consistently praised and encouraged for his efforts. His self esteem and his willingness to learn remain as high as they ever were. On the days he doesn’t have Ms Rachel, he is often in his classroom, sitting at his desk, doing his “homework” as he likes to call it.
  • We use technology to compliment his learning. We have apps and programs that allow Sol to interact in a less formal way with lessons and keep him abreast of learning with technology. It is very likely that Sol will require a laptop if he re-enters the school system. At his age in a classroom setting, this would be unlikely. Once the schools catch up and realise that differently wired kids respond well to learning through technology, then we may consider going back. Sol will always struggle to write and it will take him longer and that is a part of his challenge – why make him suffer for it if he can get all his ideas down on a laptop from the get-go?

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Learning through technology

  • While I work full-time, I have a certain amount of flexibility in my hours and destinations – I can pop in and see Sol at home! We might have lunch together or a mid-afternoon cuddle.
  • Sol doesn’t need a haircut now. If he was still at school, I think we’d need to keep his gorgeous curls contained. As he’s at home, we are going to let our little dude grow his amazing hair. Skater boy! Here we come.

There are probably a few more positives and as these present themselves, I can update in another blog.

NEGATIVES

I’m going to address the biggest one last as this is where my TRUE message for today lies.

  • Hang on, give me a second to think of one.
  • Got it! Nope, the one I was thinking about was that we didn’t get access to a school library anymore but then I remembered that my daughter is at an International School and as a parent, I can take books out of the library and so we do! In fact, Sol and I went there together and we can take out 10 books at a time. Sorted.
  • If I expand on the book-thing a little, I loved the association the schools have with the Scholastic Book Club order. And luckily my BFF can help me out with ordering books too.
  • Do I have access to materials for art, craft etc. HELL YES! Check this out! TWINKLS

So, our biggest “perceived” negative and the one I can see concerns MOST parents that ask me about Sol’s homeschooling experience is the “lack of socialisation”. Let me frame how this could have also been our biggest concern. While Sol was at pre-school, he had a ton of friends and an insane playdate schedule. Sol was loved by teachers and kids alike. He is a kind, funny, sweet kid and this draws people to him, particularly those that take the time to get to know him. Sol adores his buddies.

As the socialisation of kids Sol’s age continues in the school environment, I’ve noticed that Sol is not sure how to relate to the “style” of play of his friends. Words like “dumb, stupid, bad guy and you can’t play with us” are some of the things I have heard recently directed at Sol.  I went to an average school where bullying was common and “kids were kids”. I even had a bully who targeted me and to this day, I remember the feelings of anxiety of walking home after school thinking that my bully was going to attack me verbally and sometimes physically. We were taught to believe that we should just handle it and it would eventually go away and if it didn’t, then you arranged a “face off” with your bully and just fought it out. Which sounds horrifying when I think about either of my kids having to physically protect them selves from some asshole.

I have friends with kids at school who are being bullied or have been bullied. And this includes isolation.  While schools have implemented “anti-bullying” days and processes by which a kid can gain support if they feel they are targeted, it’s the “words” that are hurting our kids the most. In every class there is an “alpha male or female” who owns the power to grow or slay their classmates with a few choice words. And I don’t mean “choice” like us Kiwis use the word “choice” (meaning awesome, amazing). The alphas are the ones you want to be friends with because then, like the caveman days, you’ll be protected and you’ll ultimately survive. And school is like that. If you are alpha, popular, funny, good looking and smart in a neurotypical way, then you will survive and thrive the school system.

How does this pervasive caveman mentality continue year-on-year in our schools? When did I become “that mum” who advocates for the “underdog”? Do I want for my child to be subjected to that type of behaviour? HELL NO! Does this make me an over-protective parent. Well, probably, but let’s just dive a little into “what is over-protective”?

Knowing that my child has a learning challenge and will struggle in a noisy, busy environment and this will make him “stand out” as different and not “good-different” but set him up for ridicule and isolation – I choose to shelter him a little longer until he has his “witty, appropriate responses” to the ignorants that try to dim his light.

I believe that my choices for Sol will positively impact his world and the world at large. This kid is going to change lives because he will continue to be kind, sweet, empathetic, open minded and not isolated. The state of the world today indicates that we need more people like Sol. The greatest gift I can give Sol is to understand his gifts, his challenges, how his brain works and to not shy away from his uniqueness. I don’t need him to know as a 5-year old that he doesn’t “fit in” or that there is “something wrong”. I want for him to grow with confidence in who he is, own it, share it and not be judged in a negative way for it – just like every single parent I know.

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Speak for those who cannot

Processed with MOLDIV

When I write a new blog post, I generally aim to share from our experience a challenge or difference related to Sol’s dyspraxia and then to finish on a positive word that reveals the hope I have for Sol’s future, despite the daily challenges. As the days go by and as I’m able to write and converse with others about dyspraxia, I’m becoming more bold and forthright in my role as Sol’s advocate. Sol started homeschool 4 weeks ago – thanks to everyone who has asked about Sol during this “experiment”. I can see the doubt in parents faces when they ask how everything is going. I get it! If I was not up to speed on Sol’s learning difference, he would be back in the classroom with his peers and I’m not sure he would have learnt the volume in the same focused way he is getting at home with Ms Rachel. When I’m able to share that Sol has accelerated past the lesson plan set by his online curriculum for his age, I get a surprised response.  I was also surprised at our last group meeting when Ms Rachel and Ms Aqila told me that they are able to blend and “double up” on the lesson plan for reading and writing as Sol is speeding up. Math – not so much but hey! He’s his mothers son – the right brain creative!

As Sol passes the 5.5 year mark, one of the areas that stands out as “needing work” is his speech. I’m going to break it down to be fair to Sol and paint a picture that simplifies one of the indicators of dyspraxia – speech apraxia.

After Sol’s MRI at 6 months old, we were informed by the neurologist to watch out for a delay in speech. This was an accurate warning and one that proved correct. Knowing this information actually decreased my stress levels around Sol hitting milestones with speech. I set my sights on the 2.5 year mark and if he wasn’t making strides in his verbal communication by then, I would seek help. And we did find the most fantastic speech pathologist in Dr. Cindy Lian.

Sol started weekly one-on-one speech sessions with Cindy and continued these for two years. Sol believed that he was going to “Aunty Cindy’s” to play with all her cool toys but like all amazing child educators and specialists, there was always a lesson plan that was masked in play. I saw a great improvement in Sol’s confidence and speech to the point where anyone would be able to understand 95% of conversation today. The other 5% is usually linked to a transformer character that you may not be familiar with – Optimus Prime, Megatron, Gridlock and Sideswipe. If you have never heard of these characters, you wouldn’t know what Sol is talking about and he will actually think that YOU have a problem with hearing!

Left field – Ronda Rousey (UFC Women’s Champion) has Speech Apraxia – read it here

The challenges we face today are linked to the following:

  • Organsational processing – where Sol might get distracted and jump from one topic to the next. This is obvious when he is answering my question, then stops as if he has thought of something else, pauses, then resumes to talk about another topic but often related. Actually, I know adults like this too – LOL.
  • Vocal pitch – Sol speaks in either a high pitch OR a loud register. This is dependent on his environment and who he is with. When he is one on one and there are no other distractions, he has a high pitch. In a crowded room or with a bunch of other kids, it sounds like he is shouting. (I have actually booked Sol into an ENT specialist to evaluate whether his pitch is affected by his breathing as he’s always had nose breathing issues – a future post).
  • Vocal speed – and this is also linked to coordination or the inability for Sol to coordinate his mouth into the words he wants to say. Actually, his brain is thinking quickly and his mouth can’t keep up. On reflection, you’d think he would get more frustrated than he does but honestly, he’s very rarely had a meltdown or tantrum around not being understood.

In the third example, I see the greatest challenges for Sol socially. I can see how other kids respond when it looks like Sol wants to say something and it doesn’t come out fast enough. And I’ve also noticed that he is starting to NOT speak in social situations when he is around people he doesn’t know. This points out that he is now AWARE of how he sounds, particularly to other kids. To our close friends that interact with him all the time, Sol never shuts up. For them, I am grateful. And Sol has also started to gravitate towards other children who don’t necessarily use verbal communication to “play”.

Sol now has  a “group” speech session with two other boys and Cindy. The purpose of this session is to help the boys interact socially and across their unique speech barriers. Happy to report that they have a great time and seem to have no issues understanding one another. Cindy has done an incredible job of bringing them together as they are able to accept one another and build confidence in each others company.

On a positive note and highlighting Sol’s strengths here – Sol has a memory for movie lines. Not just the words, but the emotion, the intention, the body language, facial expression – you name it. Most days we are treated to a re-enactment of a character and all the “famous” lines. He really keeps me laughing and it’s something I look forward to and encourage him to do. Dave and I try to play the “other characters” to build on his passion but we often fail miserably as we don’t “say it right” – HOW IRONIC.

We are 100% confident that with Cindy’s help and keeping Sol’s self esteem high, that his apraxia will abate and he will likely go on to be the next Sam Neill – oh, you didn’t know about him either??

Sister Love

I’m Jazz, Sol’s older sister by eight years. My mum asked me to write for her blog. Not sure if its because she’s run out of things to write about or whether writing this blog post for her was another bribe so that I could enjoy back-to-back sleepovers – LOL.

So here goes –  being Sol’s sister… if I’m being completely honest, I’ve never noticed much of a difference between me and my friends who also have annoying wreckless younger brothers. I mean at the end of the day, they pull hair and kick faces just the same right? Well of course with Sol, all of those things were slightly delayed (which worked out in my favor), and I did have a few extra months that I was able to bask in the fact that no one was calling me a stupid poo bum face 24/7, but I do think that just like any other sibling relationship, very, very, very deep down, Sol loves me. I believe that part of the reason I have never noticed a super obvious difference between Sol and other boys his age was because I’ve never really had a basis for comparison. And while part of this was because I’ve always hidden in my room while Sol had friends over so that I wouldn’t be called to clean up after him (which believe me is very annoying), another part is because I had wanted a sibling for so long that I didn’t really care who he was or what he was diagnosed with as long as I had someone to cuddle with and read books to and laugh about our parents with.

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Like any other brother and sister, Sol and I have had our fair share of ups and downs, which usually ends up with him down on the ground because I’m incapable of letting anyone beat me at a fight or, in that case, pretty much anything. There are moments where he’ll come into my room reenacting scenes from movies and asking me to play along – like the time when he was three years old. He came into my room at 6 am, lay on top of me, and asked me if “I want to build a snowman”. Or the time we were having a family dinner, I can’t remember what we were discussing and Sol just chimes in with “Are we going talk about the elephant in the room?” and looks at us all very seriously. And then the time we were arguing over something (again I don’t remember what) and he says “You can’t tell me what to do! You don’t know me!” LOL – well, actually I do buddy. But there are also moments where I’ll get kisses for no reason, or he’ll come into my room late at night asking to sleep with me because he’s scared of “the monsters” in his room.

I still remember when Sol had gone for his MRI and Mom had sent us no less than a billion pictures of him with wires of every color sticking from his tiny coconut head, making him look like some odd alien with a big goofy smile staring at the camera. I didn’t even have to be in the room to know that my mom was probably cooing at him so she could take the perfect photo.

One of the things that I’ve always admired about Sol is that he never fails to get up and try again.  He’s less coordinated than the average 5-year-old but this has never stopped him from trying to flip off our couches or literally climb and bounce off the walls, but every time he falls, he gets back up. He’s always ready for trying new things and literally has NO FEAR. Believe me when I say he’s had his fair share of knocks on the head, cuts, and bruises, but not once has he let any of it stop him from trying again or trying something that he’s never done before.  I believe that even that in itself is something that many adults could do well to learn. Anyways, I could go on and on about how much Sol impresses me on the daily when he comes up with new lines and arguments on why he deserves new toys, or even just how good he is at always being himself, but I am going to say that despite everything, I do think that Sol is the very best brother I could ever ask for and I Iove him so much.

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-Jazz (13)

We Like to Move it, Move it.

If you’ve read my post called “Brainiac – Villan or Superhero”, you’ll know that we had a very real picture of Sol’s brain and the challenges he would face when it came to balance and co-ordination….. and speech.

As Sol did reach his physical milestones, albeit a bit wobbly, we noticed that his sitting posture wasn’t very strong. He seemed to hunch and was floppy when we held him. I was lucky  to know a young lady who specialised in paediatric physiotherapy and I thought it would be worthwhile having Sol assessed by her. Sol had his first meeting and assessment with Joanna at 13 months old.

The report indicated the following:

This assessment certainly didn’t indicate that Sol had any obvious motor development delays. As a baby, he was really active and always moving so I believe his muscle power and ability to meet his physical milestones in his early years was a combination of the time he spent in activity, some of the early movement classes we introduced him to and his personality. Sol is a real go-getter and incredibly determined and these qualities will carry him far. Ironically, one of the traits for dyspraxia is that they tire easily. As the brain is always thinking about where to put that arm, lift that leg, how to turn this way or that, it is exhausting. If we apply this to ourselves, we don’t think about walking, we just walk. A dyspraxic will need to remind themselves to move one leg, then the other and “how did that chair appear in the way?”

Sol started “baby gym” classes with Sathya at Kizsports. For a long time, this was one of the only safe and clean indoor play spaces in Kuala Lumpur and they offered baby movement and music classes. In fact, I used to take Jazz to these when she was a baby, 13 years before! And we also had Sathya back then. The soft mats and multiple options for climbing, as well as socialisation ensured that Sol had a lot of his needs met.

 

Sol moved onto “TheLittleGym” when he was 18 months old. This was a more challenging gymnastics based class but once again, another space where he was able to hone his skills, particularly with balance. The teachers were kind, attentive and aware of Sol’s physical challenges. He stayed until he was 3.5years when it became more obvious that he was struggling with some of the atypical physical motor skills you might see in a kid his age.

 

We had another review with Joanna at 3 years, 3 months. The stakes were much greater with this feedback:

  • generalised joint hyper mobility where several of Sol’s joints are flexible than usual
  • hypotonia – low to average muscle tone
  • compromised balance and postural-equilibrium response or the ability to stop yourself from falling.
  • poor midline organisation
  • impulsive movement patterns, not always organised
  • poor timing, fluency and rhythm of movement patterns
  • no pincer grip for fine motor skills
  • holds head at an unusual angle when performing tasks up close

We swapped out Sol’s gymnastics sessions for focused Physical Therapy sessions with Joanna. Sol has been at The Energy Source for 9 months now.

Let me tell you about Joanna – she just “gets” kids that have learning differences and struggle daily. And she does not feel sorry for them or treat them “less than”. Joanna has high standards and higher expectations. Every session is planned to challenge and, wait for it, have FUN! Sol LOVES his sessions with Joanna. They are always laughing and what looks like playing is actually all part of Joanna’s clever plan. Every “circuit” or new exercise is masked as playtime. I think of Joanna’s sessions as a personal training session for a child and about 10 times more fun. When I’m watching, I find myself laughing a lot and marvelling at how creative and clever she is.

 

The moment it hit home just how much Sol had improved, was his Pre-School Sports Day. They had to carry water in cups, complete an obstacle course, throw things, jumping races – you name it, all the things that kids with poor co-ordination and sucky balance would hate. Not Sol – he had a blast, didn’t bat an eyelid at any of the activities and gave everything his best. And…….he was awesome!!!!!! There were quite a few moments (walking the plank, not spilling any water, throwing beanbags) where he was as accomplished as any other kid on the field. I felt so proud and admittedly a bit teary. Sol did not know that these activities were meant to be hard and that he typically shouldn’t be as good as he was. The time spent with Joanna has meant that my Sol-man left his very first sports day with his self esteem intact.

 

While many of Sol’s peers will now be starting to find a soccer team to join or trailing new sports, Sol might not have this in his future. I’m not saying never – I just think we are going to continue to focus on the tasks that Sol needs that keep him moving efficiently and safely through daily life. I’m grateful that we have found some physical activities that Sol enjoys and excels at and we are going to stick with those for now. Sol is showing quite good legs for running – if we can just get him running between the lines, we will be winning! Oh – and he’s damn quick on a scooter!

On a side note, I’ve started reading an amazing book I highly recommend for any parents that are struggling to make decisions for their kids who require more of a “scenic route” to education and life.

“Differently Wired: Raising an Exceptional Child in a Conventional World” by Deborah Reber – sharing this “I’ve come to realise that if we really want a parenting paradigm that embraces and appreciates who our children are, we have to first own up to the ways in which we are contributing to keeping the outdated one in place” (p.76).

RESOURCES

Kizsports Gym

TheLittleGym Malaysia

The Energy Source

 

Forth time lucky!

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Sol has an older sister. Her name is Jazz and she is eight years older than him. “That’s quite a gap!” – I get that a lot. I was 34 years old when I fell pregnant with Jazz. Is there another way to describe “falling” pregnant that doesn’t have a negative connotation. The “falling” feels like getting sick, dropping out of life or maybe I just think too much! Getting pregnant and being pregnant was a breeze. I was fit and continued to exercise and teach group classes right up till 8 months. Granted this was some time ago and living in Malaysia, I would often get comments of concern or suggestions that I NOT lift those weights/ride that bike/go for that swim. I distinctly remember a disgusted club member walking away from a class I was about to teach after asking me if I was going to be the instructor that day. There is so much irony in this as the ladies in the rice fields of Vietnam or Bali are working up till D-day, pop out the little one, strap them on their back and carry on without blinking an eye.

Jazz was an easy, happy and social baby. I was working and traveling and she came with me and our amazing nanny, Tina. Three years pass by and we began the discussion to add to our family. I was 38 years old and it might be a good time to try again before the big 4-0.

I got pregnant quickly again and at 6 weeks, just as quickly miscarried . That sucked but then I was quite pragmatic and accepting of my age that this might happen. I recovered well. I was pregnant again within the year and things were going to plan. 9 weeks and another miscarriage. Needing a D&C this time, which made the whole situation a bit more dramatic and drawn out for recovery, both physically and emotionally. But I did recover and we were determined to keep trying. However, my body didn’t “reset” and the monthly cycles never came.

I was studying for an MBA at this time and I was on 6-week cycles for papers, assignments and exams. Every 6-weeks after a unit, we would have a 3-hour exam and then straight after start learning the next unit. It was really full on but I relished the learning.

I had my “Carrie” moment half way through the Marketing exam. I distinctly remember writing about Lance Armstrong and his “Livestrong” project when it felt like someone had dumped a pail of warm water on my nether regions. I looked down and was horrified to see that I was bleeding, just like that bloody movie! I was wearing a pair of jeans and I had a dark jacket which I quickly wrapped around my waist. I was also sitting right up the front of the class and the exit door is at the back. I started to shake and then I  started to process my situation. Do I feel sick? Dizzy? Do I think I can keep going?

I called over one of the administrators and quietly explained the situation – I had had some surgery 12 weeks back and it looked like I was bleeding heavily. SHE (yes, some respite, it was a SHE), asked me how I was feeling, if she could escort me to the bathroom and once we were outside, she asked me what I would need and if I wanted to postpone the exam and resit another day. Since I had managed to comfortably walk outside without any side effects and I wasn’t feeling any worse, I asked her to help me get some pads with reinforcements and I would attempt to finish my exam. And I did – I finished the exam, continued to bleed, calmly walked to my car, called Dave and then drove to the hospital. Verdict? Retained product of conception – basically, the D&C did not remove all the “product” of the last pregnancy and my body thought it was still pregnant and continued to act as though it was nourishing a new life. A blood test confirmed that my pregnancy hormone levels had not dropped and were present in my system. So, in for another D&C (insert expletive). And more recovery time and another year passes.

My body DID reset itself and I was pregnant again – on my 40th birthday. I celebrated my birthday in Bali with friends and family and a small 10 week baby bump…..and no alcohol. But we had an amazing time.

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Due to my advanced age and that I was now a “geriatric pregnant women”, I had to undergo all the tests plus some. My blood test at 8 weeks indicated that I had a 1/50 chance of a chromosomal issue so I was promptly booked for a amniocentesis at 14 weeks. I mean, come on! 1 in 50 chance of a problem? That means 49 chances that everything is OK right?

Dave and I went to the appointment for the amnio. Our gynae prepped me and then started to search for the heart so that the needle would be in the right place to extract fluid. A few minutes pass and she’s not chattering away like she normally does. I know it before she tells me – no heartbeat. My first thoughts are not of me or the baby but how horrible it must be for our doctor to have to tell us that the baby has died. She looks disappointed and I feel like I’ve disappointed her for the third time – 2 miscarriages and now this! Dave and I hold each other and cry and she leaves us in the room. I am so grateful he is there. Through the shock and pain, we manage to pull ourselves together and sit with the doctor to discuss how this could have happened. Of course, I’ll need another D&C and I requested if we could find out “how and why” our baby died. She confirmed that they would be doing tests. To cut to the chase on the test results, our baby had the chromosome for Downs Syndrome. DS has a spectrum of severity and for a baby to self-abort, this indicates that they were on the spectrum for the most severe. How does one process this information? This is very personal and this is how I did it.

I do not ask myself if I knew I was having a Downs Syndrome child, that we would would continue with the pregnancy. That question and decision was removed for me when our baby died. And that is the only pain I have to live and deal with. I have a greater amount of empathy and heart for those parents that actually do need to make a decision on whether to carry on with a pregnancy when they know their child will have major life challenges. I have NO judgement for those who decide that the burden may be too large, for themselves or for their other children, if they have any. This was my greatest lesson through my experience. I can not and will never judge another persons decision to keep or abort. I do not make any political or moral statement here because this is not about politics or right and wrong – this is about MY life experience. And this was one of the most painful experiences I have gone through. So at 40 years old and not sure if we will or can have another child. Oh, and he was a boy….

I had a bad knee. It was time to fix it. I was still young and I could recover well if I got on with it, rather than wait till I was closer to 50 or 60. I had an ACL replacement and stem cell injections to rebuild the years of cartilage damage I had inflicted through running long miles and jumping repetitively. The surgery went well and the rehab was aggressive – 4 hours per day, every day, for 6 weeks and then I could start hydrotherapy. I was 8 weeks deep into the stem cell injections when the thought crossed my mind that I could be pregnant. When you’ve been pregnant a few times, you get attuned to that niggling thought and that strange sensation in your body that you might be “with child”. Before I took a pregnancy test, I went out for dinner with my fellow stem cell buddies (all of us on crutches!), had a glass of wine thinking it might be my last for a while and then hobbled into the pharmacy to buy a pregnancy test. Didn’t sleep well that night.

5.30AM – Pregnant. At 42. With crutches. My heart wouldn’t stop racing. This was crazy!

I changed doctors. I couldn’t stand the thought of going back to my previous doctor with the history and fear we shared. My new doctor looked through my history and put me on progesterone injections. I was referred to Dr Ramen, a lovely older doctor who specialised in advanced maternal pregnancies at FGMC.  Dr Ramen assured me that 42 years old was fine and that my history did not necessarily mean that this pregnancy would end badly. My blood test came back at 1/250 this time – a good sign. And I was able to have a CVS at 11 weeks. This meant that before my first trimester and before I told ANYONE we were pregnant, I would know that our bubs was going to be OK and the pregnancy would be viable.

Dr Ramen called me with the results as we were traveling to Bali for our summer break adventure. He confirmed that our baby was genetically fine and that we were having a boy. I cried with relief on the way to the airport and committed to doing all I could to ensure a healthy pregnancy.

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Sol was born on 30th January 2013, 8 years after our beautiful daughter. The pain, heartbreak, surgeries and healing have long been forgotten when he smiles at me. Sol has healed my soul and has entered our lives to teach all of us a new way to view the world. And while life with Sol is not as easy as it is with neurotypical kids, I would not change a thing.

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