Speak for those who cannot

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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

 

I hope this all works out…

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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

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(Above – Sol’s classroom)

References

Bridgeway Academy

Movimento Capoeira

 

 

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.

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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