Homeschooling Finished!

I am beyond excited to be writing this post after more than a year of “pandemic homeschooling”. I am done! And I don’t mean I have packed it in, given up and thrown my toys out of the sandpit.

We have settled in New Zealand after 5 months of visiting friends and family, road tripping, house sitting, Air Bnbing, walking, so much walking to discover new parks and new places. Settling in means we have been able to find a home and a school for Sol and that is a big moment for us all. It’s a segue to the next part of Sol’s life – from isolation to integration as he is a year older from the last time he physically stepped into a school.

Coming from Kuala Lumpur, Malaysia where Sol was born and spent 8 years of his life, it was always our dream that we would be able to bring him back to New Zealand to make the most of the outdoors lifestyle, connect and build relationships with his family and learn about his culture. Sol is half-Maori and doesn’t speak one word of Te Reo (the indigenous language of Maori in New Zealand).

But that’s all about to change as Sol is enrolled in a bi-lingual primary school, 2 blocks by scooter from our home one block from the beach.

As Sol’s homeschool teacher, here are the things I learnt about the way Sol learns. These things have helped me communicate to his Learning Support Co-ordinator at his new school.

• Sol is an auditory learner. He will look up to the ceiling while I am explaining a new concept. It looks like he isn’t paying attention but Sol is “imagining” what I am telling him – forming a picture in his head. In the classroom, this may look like Sol is distracted or not paying attention – not necessarily so!
• Maths is hard. Some people find Maths easy and others find it hard. Sol is in Camp 2 but he also doesn’t enjoy it. I am taking full responsibility and assuming it is my teaching skills (a little on the militant side). The irony is that he has no issue with handling his pocket money and knowing how much something costs and how much change he should be receiving. I am hoping that Sol’s new teacher has the tools and motivation to help Sol start to enjoy the subject, even a little.
• Sol struggles to write, physically write. The process of holding the pencil and scribing the letters to the page are difficult. This is a thing with dyspraxia. The past 3 months, as Sol’s “writing” projects became lengthier, I switched it up and had him type on his laptop. He thoroughly enjoyed this and his attention to typing increased immensely.
• Sol has read 80 books – prescribed readers for 7-8 year olds. He set a goal to read 100 books by June 18th and we may still get there yet! This is Sol’s greatest success. If you can read, you can dive into other worlds, learn and understand new things and build on your imagination and the possibilities that life offers.
• Sol’s language comprehension has always been good. He can incorporate new and difficult words into conversation and he understands what is going on around him. He can pick up on emotions in conversation and has a high level of empathy. Because he still has some challenges with his speech (organisational processing meets co-ordination of the mouth), Sol has to think really hard about pulling all the words he wants to say together. Once again, he looks up at the ceiling as if to see the script which can make it seem that he doesn’t want to make any eye contact. He is desperately trying to get all the words out of his mouth that are in his head.
• Sol’s imagination is off the chain. This may have been exasperated with the inability to socialise and play with other kids during lockdown in Malaysia and then moments where we aren’t with family or friends in New Zealand. Sol can still play for hours by himself and is often making up stories and acting them out. This is one of the most entertaining parts of hanging out with Sol every day.
• Physically, dyspraxia hasn’t really stopped him at all. One of the definite upsides of being back in NZ and through the summer, was access to some amazing playgrounds. A kids playground is a FREE physical therapy session. Watching Sol scale ladders and navigate his way around the adventure of the playground has been awesome. He has to use his body multi-laterally, balance, climb, jump – all activities we used to pay for in a soft padded room LOL.
• Sol is healthier. In lockdown in NZ, probably due to “snacking” and no physical activity, Sol put on a little weight. Not enough to be concerned about but it was obvious to us and being in the fitness and health industry and knowing the stats on children and obesity, we know that kids need to move frequently. 6 weeks into life in NZ and Sol has shed that weight, grown taller, stronger and faster. He is excited to be joining karate classes and will be trying surf lifesaving in the summer. As Sol has always been a competent swimmer, putting those skills and his strength to use with lifesaving will be another great opportunity for him.

So now, my biggest concern is socialisation. After a short visit to Sol’s new classroom at Arataki School, Mount Maunganui, I can see that the class environment is very relaxed, diverse and inclusive. The kids seemed really happy, confident and kind. They enveloped Sol into their activities and he seemed more comfortable.

Time will tell and I am always hoping to be able to share good news. The dyspraxia journey is constantly shifting and it’s important that I continue to share what is happening so that other families of neurodiverse kids can relate and feel supported too.

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.

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?

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.

 

 

Speak for those who cannot

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.

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.

 

-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:

• slight hypermobility in wrists and ankles
• normal muscle power for his age
• no scoliosis

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!

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.

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.

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.

 

 

I hope this all works out…

I’m going to fast forward and write about what’s happening in Sol’s life at present. This Monday, when most expatriate kids will be going back to school after the summer break, Sol starts homeschooling.

I never saw myself as one of those mums who would even consider homeschooling! I love that my kids can be with their peers Mondays – Fridays most of the day, learning and growing with experts –  School Teachers. I have a huge respect for school teachers. I love my kids but I would never consider a career in teaching or entertaining kids. I need more compliance in my life. Teaching group fitness classes is right up my lane as people generally listen and follow along, get results and we all walk away happy!.

Let me just set one thing straight – I am not going to be Sol’s homeschool teacher. I have engaged an “expert” for that role too! In fact, I have met two fantastic humans who are invested in Sol’s success and are on board with our goals of having Sol LOVE learning, stay creative and adjust the “system” to meet his needs. Ms. Aquila and Ms. Rachel have all the youthful energy to keep up with Sol as well as being qualified teachers in Special Needs and have worked with kids that required a more specialised focus. I  had eight recommendations I could contact to find a fit for Sol and  I spent the last 3 months discussing/emailing/meeting with these incredible people before I decided on Aquila and Rachel. In the end, the decision was with Sol. They came over for a “playdate” and the love triangle was sealed.

Finding a homeschool curriculum had it’s challenges – only because there are SO many to choose from. I did not know that 3% of the world’s kids in western countries are homeschooled and this is growing. The reasons for an increase in parents looking at homeschooling is due to the following:

• when the school curriculum doesn’t meet the beliefs of the family
• bullying and unsafe schools (this is so crazy!)
• kids with special education needs
• elite athletes, movie/TV stars, entertainers
• world travellers

The past two years, Sol has attended the most amazing preschool. He was in Nursery and  Reception Years and we were able to set up an Individualised Education Plan (IEP) with the School Principal, his homeroom teacher and the Learning Support Specialist – all at his preschool! Every person was 100% invested in Sol’s success and enjoyment and I can say, Sol loved preschool. He made a ton of friends and he did accomplish some pretty big goals. His homeroom teachers are gifted people. Whilst they were not specialists in dealing with dyspraxia (and we didn’t even have a diagnosis back then), they accommodated and adjusted to feedback we were able to give over time. Things such as Sol’s inability to sit still on the mat was due to his sensory processing challenges – so they let him walk around, or lie down or hold on to something and he was never scolded.

They helped him develop appropriate socialisation skills in the classroom and through his preschool, we found that Sol loved the stage and drama. He was always deeply intrigued by the productions and shows the kids were exposed to. And recital day was always a joy for us – Sol loved being on stage – singing, acting and dancing. He’s never had stage fright and has the BEST smile. After one recital, a kind parent said ” Sol is so good, he should do speech and drama”. He was three years old at the time? And had significant speech issues, so I had a wee chuckle about that compliment.

For a really fun video and understanding on sensory processing challenges, check this out! I have a friend in Australia to thank for sending me this video after reading my blogs – thanks Gayle! Warning! You may end up spotting some of these factors in your own kids – LOL.

As we prepared to have Sol move across to the Main Campus for Year One, we were able to visit the school, meet the teachers and discuss with the Learning Support at the Main Campus how Sol might “fit in”, “adjust” or “adapt” to school life in a much bigger, busier environment. I have many friends who have children attending this school and it is without a doubt, an amazing school. I have friends that are teachers at this school and they are passionate about teaching there. And I truly believe that all the International Schools in Kuala Lumpur, or Asia for that matter, are world class facilities…..for neurotypical kids. The International schools are quickly realising they do not have the resources, skills and facilities to cater for the 10% of kids (yes, that’s 2 kids in a class of 20) who have differences in learning styles or learning challenges. They are only challenges because they don’t learn the “system”. The schools are preaching “inclusiveness” but are applying a “band aid” by having parents with SEN children employ a PLA (Personal Learning Assistant) to follow their child around the classroom and the school. International School Fees are a house deposit, EVERY YEAR, and then the extra employment costs of a PLA. GO FIGURE THAT OUT! And I can assure you that kids with SEN are already spending hours after school with OT’s, PT’s, Speech sessions and extra tuition, all paid for by the parents.

Having Sol sit with a class of 20 kids and realise he is not able to follow what the teacher is asking or complete the tasks required would quickly erode his self esteem. If I gave a rating of Sol’s self esteem today, it would be 12/10. This kid thinks he has superpowers, is amazing, can do anything, play with anyone, try’s everything, and is relentless in his pursuit of what he wants. THIS, I cannot allow to change. I need people around him that never lose sight of that and a learning environment that engages Sol 100% of the time, where he has the time he needs to focus, learn and succeed. Instead of employing a PLA, I’ve employed a homeschool tutor who will spend 12 teaching hours just with Sol and a flexible homeschool curriculum that will support him through the years.

In the end, I chose the Bridgeway Academy as it allows the flexibility to adapt the curriculum for a child with Special Education Needs. Bridgeway is an American curriculum and Sol is in Kindergarten this year. This is equivalent to Year One in the British system – funny that it’s called a “system” because that’s exactly how I view it now. A system of checking boxes, getting into boxes, staying inside the box, call it what you will. In Sol’s Kindergarten year, there are some “benchmarks” and we can go as slow or fast as Sol likes. We can also adapt the learnings to whatever Sol is interested in and apply other resources into the lessons too. Today, we will go to see the Moscow Circus and when Sol starts homeschool this week, a lot of his learnings will be around his experience at the circus. With any American curriculum, there are going to be elements of “nationalism” and so instead of celebrating the Forth of July, we will celebrate Waitangi Day! Instead of learning about Thanksgiving, we will incorporate some of Sol’s Maori heritage.

Sol has homeschool Monday, Wednesday and Friday mornings, 8.30am – 12.00pm. In the afternoons and on Tuesdays and Thursdays he has OT, PT, Speech, Visual Therapy and group sessions at a private learning facility – all of which deserve their own posts in the future.  Sol is still taking swimming lessons and recently joined capoiera and loves it.

Am I anxious? Absolutely! I am definitely stepping outside my comfort zone on this decision to homeschool Sol. I listened to my gut instinct that was screaming that a mainstream environment in Sol’s formative learning years could cause long term damage to his self esteem and potentially set his learning back! I listened to heart breaking stories of other families who had tried the “promise of inclusion” at one of the swanky well funded International Schools only to have their child fall into themselves and beg not to go to school. I can and have learnt from those who have attempted the minefield before me. I refuse to have Sol think for ONE second that he is “stupid or dumb” because I also know, that is not the case. And I refuse to risk having ONE person in his life that doesn’t see or believe in his potential. Some may question my decision or worry for Sol’s lack of contact with his peers but I believe, as his mum, that he will gain more from this opportunity and any of the “missing” pieces we can figure out. Actually, most of the time I don’t even need to figure it out as my support group are always available to feedback, motivate, and provide new and exciting information.

So wish us luck! And I’ll continue to blog about Sol’s learning experience along with more posts on his superpower – dyspraxia.

Imagination is more important than knowledge – Einstein

(Above – Sol’s classroom)

References

Bridgeway Academy

Movimento Capoeira

 

 

Just Keep Swimming….

From Sol’s very first bath experience at home, he relaxed. He could have been one of those infants that fall asleep in the water. If you think about it, you’re swimming around inside your mother’s tummy for 9 months, it’s all warm and cosy in there and you don’t have to navigate the sensation of gravity and then BAM, you’re born into the cold light of day with noise and people and NO WATER!

When I would bath Sol, I would pour water over his face, just to, you know, see what would happen. Even as I write the sentence, I’m thinking someone will interpret this to mean I was trying to drown my infant. But I did it because my gut instinct said a baby loves water and they are used to this.

We have a swimming pool at home and living in a tropical country, you can swim all day every day. It would be natural that our kids would be swimming from a young age and there is that fear they might just toddle outside and jump in the pool by themselves and then we would be a statistic. Note this – it is NOT a law to have barriers around pools in Malaysia. Most home swimming pools are “in ground” which means you can open your door and jump right in. This is great if everyone can swim but a hazard when you have crawling babies and toddling toddlers – unless they can swim of course!

Two of my former bosses were swim coaches before they were CEO’s – as I write that I ponder on the coincidence. Actually, it is just a coincidence because one is a really great person and the other…..not as great. And they both shared with me their insights into the benefits of swimming from a young age. We are talking about 6 week-old infants starting to swim. You’ve seen the cool YouTube videos of babies naturally swimming under the water, popping up and taking a breath before diving in again. This is what we did with Sol. I DID seek a professional opinion and research the “when/how/what/why” of teaching an infant to swim before attempting this at home. If you are interested in finding out the “HOW”, drop me an email and I’ll describe to you how we taught Sol to swim from 6 weeks old.

From the pictures above, you can see he is under the water and his eyes and mouth are closed and as he comes up through the water, he is perfectly OK with it. The photo you don’t see is the beaming smile every time he comes up. And that’s because he was pretty young. As time went on, this little fish would start squeeling and kicking to get into the pool. Once he was in the water, it was like he was HOME.

Hippocampal Neurogenisis is the crazy name for ongoing development of the nerves, motor neurons and brain in relationship to movement. When it comes to swimming, here are the things I’ve learnt:

• Swimming can boost blood flow to the brain by up to 14% giving improved mood, better concentration, focus and cognitive function.
• Swimming improves gross and fine motor skills and connects the two brain hemispheres improving bilateral movement, and the ability to learn. This is especially true for kids with special needs and/or dyspraxics – BOOM!
• Swimming promotes hippocampal neurogenesis in the regrowth of brain cells in areas of atrophy – in a previous post I wrote how Sol’s right cerebellum was 30% smaller than the left side.

From a Mum’s observation, the benefits of swimming to Sol’s confidence, sense of joy and socialisation make it all worthwhile. Sol will probably not be that kid that plays rugby on the A-team (or D-team), so having a physical activity that he can do well, and he feels good about, will maintain a high level of self esteem and confidence. When Sol swims, it’s like the sun shines brighter – his smile as soon as his body hits the water is a joy to behold.  The removal of gravity for Sol is pure relief for him. Not having to negotiate bumpy pathways, sharp corners or people telling him to hurry up would be equivalent to a drug high. In the pool, Sol has a “level playing field” with other kids. He’s happy, so he’s having fun and often initiating the activities and encouraging other kids to swim along with him.

After an hour of swimming, Sol is relaxed and focused. He can draw or play by himself for an hour or more. Sol is now having formal swimming lessons – he is learning the front crawl OR freestyle as we call it in New Zealand. This is quite a challenge as he is required to alternate arms and take a breath on every second stroke. And keep his legs kicking. For a person with dyspraxia, this would be like a dancer being forced to dance “off the beat”. (Not so hard for my husband!). But he is working at it because he loves being in the water so much. Check this out! (Sol – 4.5 years)

Another symptom for dyspraxia is general fatigue. I know of some kids that literally fall asleep at their desk due to mental fatigue. The process of ALWAYS having to think about how your body moves or trying to remember what the teacher said first, after they said three things quickly, and then write that down would be equivalent to moving through mud while your brain is on hyperdrive. That’s right people – people with dyspraxia have average to high intelligence but I’m not going to write about that here. The point is, swimming has provided Sol with the ability to gain fitness and focus so he just DOESN’T.GET.TIRED – I occasionally wish he would but I know that his fitness is a GOOD thing. He doesn’t give up – he will always try.

I’m going to leave todays’ blog with a cool video and picture – Sol wake surfing with his dad (Dave) at 2.5 years old and his first duathlon at 4.5 years old. My little fish has my heart – hook, line and sinker.

Friday Feels – Putting the Brakes on

Early morning – check my phone – message: “Looking forward to reading your next blog post today”. Gulp.

It’s Friday and I’ve committed to writing a post – every Friday. And all week I’ve been thinking about what I should write about today. Should I carry on with “what happened next” in Sol’s journey? After reading last week’s post, I felt overwhelmed by all the technicalities of having my 6-month old baby have a brain scan. And explaining what happened and the results felt incredibly clinical.

This week, I have received “I wish more parents were like you” about 3 times.  You’d assume I’d feel a bit chuffed and proud of myself when I receive this affirmation but I want to assure you, none of that statement makes me feel like I’m kicking ass as Sol’s mum. I feel happy for the specialists that confirm it because I can see how frustrating it can be for them to try to help parents that are in denial about their child’s needs. If I am ONE parent that takes on board their professional opinion and implements it for the benefit of my child, then we are all making the world a better place and making a difference to a special soul – my Sol!

So Friday morning, I’d just worked 60 hours in 4 days and I was feeling pretty smashed. I booked for a facial after a long hiatus, and lay down to receive my “selfcare” (it’s the new buzz word you know). “What am I going to write about, what am I going to write?”

And then the tears came. There is something incredibly therapeutic about having someone touch me, whether it be hair, massage or facial. It feels like lying down and human touch brings my thoughts and feelings to the surface. So todays blog, instead of a clinical breakdown of Sol’s diagnosis and journey, is about being a parent of an SEN kid. This is the first time I’ve also written that Sol has SEN – Special Education Needs. Another “box” to compartmentalise the fact that he doesn’t sit in the 90% of a failing education system – oh wait, gotta put the brakes on, can’t write about that in this post.

This post is how I feel about the incredible journey I am blessed to take with Sol-man and those loving people who have knowingly and unknowingly decided to come with us. To put this into context, a little about me, Sol’s mum.

I’m a Kiwi, born in New Zealand, neurotypical (jokes on me), sister, dancer, athlete, high performance student. I studied Physical Education at the University of Otago and went into the fitness industry just as Madonna made “Personal Trainers” a thing you needed. So I have an in depth understanding of how the body works. I also took some papers in Sports Psychology and Nutrition and these have served me well across career and life. New Zealanders are the most self deprecating people I know – down to earth, not dramatic, creative, friendly. We love the outdoors, physical activity, sports, beach, barbecues and good belly laughs at the expense of each other, usually close family members. This culture and upbringing has given me some of the qualities to help navigate a future amazing life for Sol. I have a good “bullshit reader” on people – I can pick a fake a mile off. I don’t take myself too seriously but I can prioritise the things and people in my life that are important. I’m loyal – to my family and those who take the time to get to know me. This is the moment that the tears came during the “face mask” – I thought of those special people who send me an sms or kind word every few days to encourage me to keep going, keep advocating for Sol, keep my head up. It tells me that even when I don’t see them, they have me in their thoughts. That kindness…..I can’t even. (Means, I have no words).

And I guess the way I “present” myself to the world at large indicates that I am a woman that knows what she’s doing and knows how to get there. And in some aspects, that is true. If I think about how I might be perceived – organised, go getter, stoic, driven. They are all admirable qualities but the quality I have most harnassed the past few years, is EMPATHY. Because this quality is what gets me through all the challenges that I have experienced. And all the people that have shown empathy (not pity) for me and have allowed me to reciprocate, have helped me grow the most as a mother, wife, friend and person.

It’s getting kind of deep and I want to bring this back to Sol and so I’ll frame how EMPATHY has best served me. In my journey to investigate Sol’s unique view of the world, I’ve been “friended” and I’ve “befriended” many parents in the same circumstances. After this post, I may even be “unfriended” – lol. We are all learning about our kids and what they need to be the best humans possible. We are all battling an education system that demands we pay “extra” to allow our kids to sit in a mainstream class environment without accepting they need to step up too. We are all sharing contacts, information and insights into the latest therapies, education, tutors, playgroups, etc. This group of enlightened parents has been a God-send. And my empathy for those parents that are struggling to gain a diagnosis so they can help their kid move forward – three words – Don’t. Give. Up.

And there are parents that deny that their kid is unique. I’m using the word “unique” pretty loosely because I don’t want to say that having a learning challenge or social challenge is a negative thing. When it comes to dyspraxia,  Daniel Radcliffe and Florence Welch have done pretty OK with it. The denial is two-fold.

1.The desire to have their kid “fit in” to what society deems as “normal”. That they can read at an acceptable level, can do math, can write, can play sports.  And that’s pretty much it! These parents want their kid to have a “normal” school life, to be in a normal classroom with 20+ other normal kids and that some of the “normal” might rub off on them and then we can all breathe easy and maybe no one will notice that said kid has some learning challenges until they start to act out and then get the label “bad kid” and next thing you know they are standing on a roof ready to jump!!!! Did I say Kiwis weren’t dramatic???

2. EGO – yep, I said it. Ego is that little voice that says “You’re not good enough” or “You’re better than everyone else”. Ego also tells you that if your kid is acting up or not succeeding in society, that you are a “failure”. Ego also turns up the dial on what “everyone else thinks”. Ego sounds like this – “What will XXX and XXX think if they know my kid needs to have speech therapy”. “What will THEY think if I take my kid out of school?” “What will my parents think if I want to get my kids some extra support?”.

Once you can put your own ego aside, not worry about what “everyone” else thinks and go with your gut feeling that your kid needs some support, the journey gets really exciting. And I mean that! I’m excited about the people I’ve connected with, the information I’ve learnt, the support I’ve been given. And I’m most excited that I might just be the next “Harry Potter’s” mum.

I have huge empathy for those parents who need to navigate through societies turned-up speaker on why “normal” is BEST. I look forward to their break throughs when they realise that there is a whole world of help, support and love ready to bring them into the fold and help them create the most amazing world for their unique child. I am a product of this support and love and today’s tears during my “scrub and serum” was an acknowledgement that I am not alone and I am blessed by an incredible support network for whom I could not do what I am doing for Sol, without them. Special thanks goes out to Steve Jobs who, without his bucking the “normal” system, I would not have this lovely laptop to share my thought’s through. Peace Out.

 

 

Brainiac – Villan or Superhero?

In my last post when the ophthalmologist said “We may want to follow up with a brain scan” – that’s what happened. Sol’s Delayed Visual Maturation improved somewhat but didn’t correct to the level we could breathe easy at the 6-month mark. We were recommended to Dr Malinee (Paediatric Neurologist) at Pantai Hospital so that Sol could have the speed of his vision and tracking measured and an MRI on his brain. Sol was 6 months when he went through this.

The first test, as shown in the photos, was to measure Sol’s response time from seeing light, processing light and adjusting. Waves of light would flow past his face and his brainwaves would process this input.

The second test required us to sedate Sol as he would need to be asleep for up to an hour for his brain MRI. The hospital perfectly timed all of this so that once Sol had breast fed and we gave him a shot of the “sleepy stuff”, he promptly fell asleep and entered the chamber wrapped tight in blankets and with his head bound to a pillow. He was a trooper and never woke up during this time. Actually, it must have been some pretty good stuff as it took another hour for him to wake after the MRI. The MRI was to assess if there was any structural issues that might give us insight into Sol’s visual processing.

RESULTS – measurements for Sol’s visual tracking showed a “slower than normal” processing time. Expected. The brain MRI showed his right cerebellum to be 30% smaller in size than his left cerebellum. BOOM – the old cerebellum. Now, if you have aspirations to be a dancer or professional ice skater, you are going to need a full functioning cerebellum as balance and co-ordination are KEY. Actually seeing the size difference in Sol’s cerebellum opens a can of worms – Can the cerebellum return to a normal size? How will this affect Sol as he grows? What kind of activities can we do to help Sol “compensate”?

Once we had the test results, we met with Dr Malinee and a geneticist colleague of hers to rule out the potential of further issues. From our family history and Sol’s tests, it didn’t appear that his DVM and undersized cerebellum was linked to family history or a genetic mutation. The amount of detail and information we discussed had me in a “mind-meld”!

I think one of the key take outs from these tests and the discussions with the doctor, was to understand that Sol would have some challenges ahead that would be related to balance, coordination and meeting physical milestones. I know from my own school experience, if you were the kid that couldn’t catch a ball, then you were the last kid picked for the team. I’m going to dedicate a post to all the things we did for Sol knowing what we knew to give him the best chance to succeed physically, socially and emotionally.

The doctor advised us of the following:

1. Sol might have some “low muscle tone” which would affect his sitting and walking postures.
2. Sol might struggle to coordinate crawling or be a late crawler.
3. Sol would be late to walk and not to expect anything before 18 months, likely 2 years.
4. Sol would struggle with physical activity and get very tired.
5. And this – his speech would likely be affected and delayed.

So now that Sol is 5.5 years, how did he go?

Yes – he did have some low muscle tone or better known as hypotonia. One of the things I did notice before Sol had these tests was that even up to 6 months, when I carried him, I had to support the upper part of his back. He wasn’t able to “sit on my hip” as it felt like he would flop backwards. And Sol’s speech was definitely affected and I’ll save that for a future post too.

Let’s talk about the good stuff now. Sol crawled from 8 months and continued to crawl very effectively and with significant speed up until 15 months. He actually graduated to a bear cub crawl so that he could get around faster. When you watch someone (adult or child) try to execute a bear crawl, it takes a lot of coordination. Sol nailed this. And there is some research that indicates crawling for longer is great for brain development – I’ll take that one.

Sol started “cruising” around the furniture from 11 months and took his own unassisted steps from 14 months. By 15 months, he was walking. When you’ve been warned that this might not happen till at least 18 months, this was major celebration for us.

And that Sol would get tired of physical activity? To this day, I occasionally wish this was the case. But Sol’s natural personality type as well as his energy ensures that from sun up to sun down, this kid does not stop moving. And I am grateful for that. As we are a family that values health and physical activity, having another child that is physically active and loves it, is a blessing.

Armed with this knowledge, we were able to continue with some of the activities we had already started and add additional activities that would complement Sol’s growth. But, it also made me hyper-aware that Sol might have a higher incidence of accidents. I would say that I did become that “helicopter mum” as I just never knew if he was going to fall off something or walk into something. I must have excelled in that role as I can confidently say that he didn’t have any bumps that were any worse than normal.

RESOURCES

I don’t have any videos of Sol doing the Bear Cub Crawl but if you want to know what it looks like, click here https://youtu.be/TBmfeECk6-4

Pantai Hospital Kuala Lumpur

“One who takes the road less traveled earns the rewards most missed.”