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