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

 

Brainiac – Villan or Superhero?

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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.”

 

 

Why Won’t he Look at Me?

Is this my best side?
Even early photos show how Sol would “autocorrect” his vision by turning his head to one side. Damn cute though, right?

I thought I might start with the whole “being pregnant” thing but that’s not really where the questions started – these come a bit later. Having the fortune of an older sibling and understanding the “milestones” of an infant, I started to think there was an issue with Sol’s eyes when he seemed pained to make eye contact while breast feeding. For any mum of a neurotypical* child, you’ll know that your newborn will literally stare into your soul while you are feeding them. It’s all part of the bonding and “you’re gonna love me” manipulation of helpless, innocent babies. We fall for it hook, line and sinker and here the next 12 months of sleepless torture ensues. But I digress.

Sol would not/could not make eye contact. And it wasn’t just while I was feeding but when I held him up to my face to interact. His head would turn away and then turn the other way as if he was actually “avoiding” making contact. Strange….or is my baby BLIND???!!! You know those crazy thoughts that go through your head when you’re sleep deprived and obsessed with your little one. The thought that there might be a “problem” and off to the paediatrician you go armed with the internets “worst case scenarios”.

Sol would have been 3.5 months by the time I broached this with his doctor. She conducted a simple “eye tracking” test and confirmed that there might be a vision issue. Anxiety goes from an 8.5/10 to a 10/10. Armed with a recommendation to see the paediatric ophthalmologist (say that 10 times fast), we scheduled Sol’s first formal vision assessment.

The tests were relatively simple – tracking of objects, pupil dilation in light and dark and clapping to check speed of response from hearing to making eye contact. The diagnosis.

Delayed Visual Maturation (click on for medical description). OK, so sometimes, I’m going to add a link so you can look up the medical term for any of the words I’m going to write about to describe our journey and I’ll also give you my interpretation. DVM is the inability to track moving objects or focus on any object (includes faces) that are too close. That was my experience with Sol. The photos above all clearly show that he turns his head to focus on an object, face, or in this case, my iPhone that was constantly shoved into his face taking photos of his “best side”.

How do you correct DVM? Well, it’s dependent on the severity of the case but generally, through play that involves rolling balls past them while they are in tummy time or sitting up. We had some brightly coloured balls that we would roll across the floor and Sol would follow the ball but his head would move like he was a robot – not smooth. He also needed to physically turn his head to follow the ball and not just allow his eyes to track the ball. So, from that, I had a question about “peripheral vision”. Actually, I had a LOT of questions. And the other “ego-driven” questions like – how many other kids have this? Is my baby boy going to be like this forever? How will this affect him? When will he be normal again? So, HELLO Facebook Groups. Lifesavers! I joined a FB page for Delayed Visual Maturation and instantly gained insights, ideas and supportive and encouraging feedback from strangers all over the World.

An interesting discussion with the ophthalmologist indicated that we would be able to test Sol further to rule out “other future development issues”. Don’t you hate it when they say shit like that and you’ve gone from a 10/10 anxiety level to a 12/10? All of this while I’m trying to feed Sol and take on medical terminology in a sleep deprived brain fog. Did he say – “You might want to follow up with a brain scan” or “There might be some other factors you’ll want to rule out” or “DVM is not always an isolated event” or ALL.OF.THAT. WTF?

At this point I’m going to leave the “next steps” till another post and finish on a positive. So my Sol-Man has a diagnosis for DVM – we can work with that. As a physical educator and information nerd with a highly tuned gut instinct, I knew there were things other than “rolling balls” that I could do to help Sol. I have a pretty good grasp on how the brain functions and how the body develops. I could also see from Sol’s developing personality that he had a high energy, social nature and that I would be able to work that in his favour. He was feeding well, sleeping well and loved being taken out to different places. He was never easily afraid and seemed highly curious. ALL GOOD THINGS.

Word of the Day – NEUROTYPICAL. I had to really ponder on the meaning of this. Neuro – the brain and nervous system. Typical – expected behaviour. So in a nutshell, it’s when you meet all the benchmark milestones and respond to them physically, mentally, emotionally and socially according to what is deemed “normal”. As my 13 year old daughter Jazz says “It’s the way they teach us to pass tests so we can get high GPA scores and a better chance of getting into a prestigious expensive colleges so we can get the best jobs, be normal and life is perfect”. All said with lashings of 13-year old sarcasm and irony. Jazz is neurotypical. LOL

OTHER RESOURCES

Baby and Beyond (Paediatrician)

International Specialist Eye Centre