Give me sleep!

There's a major factor contributing to my tiredness - poor sleep.

I had another night of bad sleep. He has terrible sleeping habits. He doesnt sleep through the night. He requires help to get back to sleep. That means, carrying him and walking around the room, with music on. He wakes up less now compared to when he was a baby. Still, that's 17kg of weight bearing exercise at unearthly hours. How much longer can I carry him as he grows bigger and I grow older?

He loves to cuddle up to me. I guess he feels safe and secure near me. But what happens is that he usually ends up in my bed, pushing me right to the edge. I've woken up so many times, in the middle of the night, precariously perched, sleeping on the side of my body, right on the edge of the bed. It means, a stiff body the next day. If I realise it in the middle of the night, I'd get up and move to his bed instead. But usually the damage has been done...I'd lost precious hours of proper sleep.

I could of course push him to his side of the bed or better yet, place him back in his bed. But that risks him waking up and going through the whole putting him-back-to-sleep-routine. There have been times where I can't get him back to sleep in his own bed, ending up carrying him for 20mins in the middle of the night.

A few consecutive nights of bad sleep turns me into a walking zombie. Brain fog. Super sensitive. Desperate for sleep. In the past, when it's really bad, I'd get my helper to care for him for a few hours in the morning while I try to get back the lost sleep. But the quality of day time sleep seldom matches that of a proper night's sleep.

Things were far worse when he was a baby. He'd only sleep maybe max 3-4 hours at a good stretch. Otherwise, he'd be like waking every 2 hours. Back then, there was the poor feeding habits to deal with on top of that. Back then I didnt know he had CP. Back then I didnt know he had problems sucking. So I'd be offering the bottle but he'd take only a few sucks, then cry badly. Poor kid was probably so hungry, with colic to boot. I'd be wraught with worry cos he's not taking his milk, worry he'd be dehydrated, worry he's not getting enough sleep etc. Sleep depravation amplifies the worries. You cant think straight.

Even when he was 3 years old, he'd wake up on average 3-5 times on a good night. On a bad night, it'd be 5-10 times of waking. I had learnt over the years that the fastest way to get him settled down again when it's a bad night is to let him sleep right on top of me. I was and still am, "mummy the human mattress" for him.

Got to end here. He's awake and my day with him begins. There's school today, so no time to waste.

Music class - 27 Nov 09

He had his music class on Friday as a replacement for Sat's. It was just 2 kids, A and my son.

Shouting experiment
The teacher decided to try out something he did in the past, to see if it has the same effects on my son. He asked A to stand far away at the kitchen door while the teacher was at the piano area. Then my son wanted to join A there too - he likes to copy what other big kids do.

He asked A what colours were the objects that he held out on his hands.  A shouted out the colours and my son did too when it was his turn. I was surprised that my son's speech volume was so loud! Articulation is a bit off e.g. "blue" = "buu" cos he cant pronounce the letter "l" yet.

If he can speak so loudly all the time, I think a lot more people would be able to understand him. His music teacher tells me to do that at home ie speak to him from a distance. He says it is the visual cue (the distance) that prompts them to speak louder. In the past, just verbally asking him to speak louder didnt really work. So, using visual cue might do the trick. His music teacher is so kind, caring and such a blessing!

Fingering on keys
The aim of that activity was to teach him which key is do, re, mi, fa etc. He's to play along to what the teacher plays. For the older boy, it was to teach him which finger goes on which key. Needless to say, my son isn't ready for the fingering cos he has issues with finger manipulation. I know of activities that can help but is a matter of finding the time and making it fun for him.
Twinkle Twinkle
Teacher seemed pleased when he was teaching my son that tune. I didnt get the chance to ask why. I'm guessing it's because my son moved his finger to the right keys (for just a few notes). In the past 2 weeks, I had wanted to ask the teacher to try letting my son move to the keys himself (instead of teacher moving his hand there) cos I suspect he is able to for a few notes. Perhaps I'm overly optimistic?
Follow the leader
He's meant to march to the beat of the music, taking turns with A to lead. My son still thinks that when someone is behind him, they are chasing him. He also isnt able to truly follow the lead if a different path is taken. I think he's too excited and a bit of a overload.
Boomshakers
Teacher brought out a new music making instrument called the boomshakers. Very cool but I got worried when he showed them how it's used. I could imagine kids misusing them to whack each other! But of course, it didnt happen. They whacked the mummies and teacher (ouch) and the chairs to get the sounds of the different notes.

I noted that my son was very slightly gagging (more like yawning) very often when he was whacking it. It's that correlation again between his hand movement and oral motor problem, which I dont understand fully.
Soundmakers
Another cool music making object. Kids love this. Noted that he could follow very simple rhythm of a maximum of 3 evenly timed beats. If it's more than 3 beats e.g. 4 beats, he gets excited and beats far far more. Also, if it is unevenly timed beats e.g. slow fast fast, he cant do it. This one I can understand cos it's a problem with his reflexes (I think to do with sending of messages from brain to muscle). Still, I'm happy enough to see that he is finally making a tiny bit of progress ie. can copy/repeat 3 even timed beats.

Advice - 4 yr or 5yr old class
Since his music teacher is very experienced not just in music but also understands early childhood and has observed my son, I asked if he should be with the 4 or 5 year olds next year. His advice was to put him with 4 year olds because of his motor disabilities.

Clone me please!

Warning: this post departs from my usual topics. I need to release my frustrations here.

I want a break. But there's no point having a break. The work will simply pile up after returning from my break. My To Do list will simply grow longer. I would have lost that time to do more with my son. I would not have truly rested during the break cos I'm not able to comfortably leave him in the care of my helper alone.

Perhaps I should wish for a clone. A clone for mummy duties that will make sure he gets PT, OT, ST activities and also develop his cognitive and social skills. Another clone for housewife duties that can wash and iron my husband's clothes, cook healthy delicious recipes for the entire family, do the groceries, organise things so everything is efficient, smooth, clean, no wastages, getting value for money expenditure, better manage the helper etc. And one more clone for sister duties.

I'm very tired. I'm very very tired. I wish time would stop and allow me to rest. I wish I can sleep properly at night. It's been busy the last few weeks. And looks like it'll continue into next year.

Being my son's shadow aide simply makes it worse. I've suddenly lost 4 hours. Time which I would have used for his physical therapy activities or to run errands.

I've not done proper groceries for 2 weeks running. I just grab whatever whenever it's convenient. I find it hard to plan the week's menu like that. While at Desa Parkcity, I run into Jusco to grab bits. While having a quick fast food lunch, I run into Giant nearby for bits. When I couldn't get a parking at the book sale venue and saw I had an hour before he wakes from his nap, I headed to Cold Storage for bits.

The same goes for buying Christmas presents. I'm very late this year and likely to complete the list a week before Christmas. I just bought my son's birthday gift 3 days ago, while at Desa Parkcity (for his pedalling exercise) which happened to have a MPH sale. In the past, I would have scouted the shops for their selection, narrowed down my choice, go around the shops comparing prices, then only purchase it.

The plumber has been postponing for over 2 weeks, so we've a leaky water outlet from the basin. The shower head needs a new O-ring cos I cant find the right size at the shops. The contractor owes us some aluminium bars, for which I've been chasing for over 4 weeks. I need to get a second opinion on some sewerage pipe problem at the shop. I'm waiting for DBKL's specifications for a drainage issue which I've no idea whether it'll arrive and in the meantime risk being issued a summon.

Just what the heck have I been up to? I'm a housewife. I dont have a 9-5 job. I just have one kid. I have a full time helper. I dont have a boss breathing down my neck, so why should I have stress. I set my own deadlines right?

Let's review the week past:
Monday - Thur mornings: shadow aide. Trying to inject some activities so he doesnt waste his time there since teacher is so hands off. Try to settle him in (where's his class/toilet, lining up, wash hands, where are bags kept, ask permission before taking toys, etc etc). Teach him social skills etc etc. It's not just about making sure he doesnt hurt himself.

The rest of Monday: lunch, update blog, rest 30min before he wakes, play with him, shower, do the Neurosuit preparation exercises, get him into the Suit (which he hates but is beneficial to him), off to Jln TAR shoe shop to take measurements, get stuck in jam going there and coming back, stop by Lake Gardens to squeeze in some physical activity, get stuck in jam, dinner, shower, read book, sleep.

In addition to the routine and mundane stuff, Tues afternoon's main activity was to take him to Desa Parkcity for his pedalling exercise for an hour (exc travelling time). Also popped into Jusco there.

Wed afternoon: CST therapy an hour, then off to Titiwangsa for his pedalling. Very tired but I was swimming in the "feel good hormones" cos I was so happy with his little bit of progress.

Thurs afternoon: KizSports for his physical activity. Left him there with helper. I went off to Jusco for groceries and wasted 30min waiting in line for the cashier. Grabbed a new outfit for my son when saw the offer they had on (mother in law gave cash a few months ago for me to buy an outfit for him, so this is long overdue). Also wasted time cos I couldnt find the gift I had in mind for my sis.

Fri: Havent slept well for 2 nights in a row, so already tired. Music class in the morning. It was either Titiwangsa or Desa Parkcity (I forgot) again in the evening for pedalling. Went out for dinner.

Sat: Desa Parkcity for pedalling in the morning. Checked out the new KizSports at Desa Parkcity. Turns out to be opened by an ex-colleague and her partner, so discussed about my son. Went out for lunch. Dropped into Giant for bits. Evening, Titiwangsa for pedalling. Went out for dinner.

Sun: No pedalling. Very quickly read Sat's and Sun's newspapers while having a late breakfast (8.30am). Went for Big Bad Wolf Book sale and an errand for my brother (I was very happy to have that time away from everyone else). Went for a playdate for my son. Went out for dinner.

Am I a really pathetic mum? So easily tired? Unable to juggle everything? Why can't I take it easy, relax? I dunno. I want to give up but I know I can't and I won't. I know I'll perservere with God's help. But at times like these, I feel like I'm really running on empty. When my fuel tank's empty, the tiniest spark ignites the fumes in the empty tank.....

Bits of his speech this evening

These are three clips of his speech that I particularly noted this evening. I'll write it down before I forget.

Bigger than
A few weeks ago, I was teaching the concept of "bigger than", "smaller than", "longer than" etc. Whilst he knows the meaning of "big", "small", "long", "short" etc and how to grade things from small, big, bigger, bigger, biggest etc, he was initially confused that there is a difference between "x is bigger than y" and "y is bigger than x".

After this evening's little conversation he had with himself, I know that he's understood the concept. He applied it in a humourous way that I never expected. Whilst walking up stairs with me, he said "I kentut (pass wind/fart). I kentut. Mama's kentut bigger than my kentut. Papa's kentut bigger than my kentut."

The phonic sound of double "oo"
Over the past month I've been introducing to him new phonic sounds, sounds which are beyond those represented by the individual 26 alphabets. It's unfortunately not a structured approach as I've not had time to make the relevant materials for the Montessori blue series (books, matching word and picture cards). So whenever I can, while reading aloud to him, I'll point out those words with double vowels like "oo" and "ee", and slowly trying to spot consonant blends like "sh" and "ch" but that's harder.

What I usually did was to cover the initial consonant and the final consonant of a word with double vowel. This would then expose only the double vowel "oo". I'll then say "twin letter o makes the sound ooo". I never got any feedback whether he understood or whether he even cared to listen.

This evening, he was willing to read two new homemade books (Pink series), after a few weeks of not picking up my homemade books at all. After he read them, he was observing the cover. On it was written "(his name)'s Book" and then followed by the title.

He used his fingers to cover the "B" and the "k" of the word "book" then said "two o's make the sound ooo". He repeated it a few times because I didnt understand what he was saying initially and his fingers didn't exactly cover those letters properly (fine motor problem). When I finally understood, and repeated back to him what I heard, he was very happy. So was I!

That's me!
As I mentioned above, it's been several weeks since he was reading the homemade books, so he's forgotten the "stories" in most of them. In his book titled "Who", on the very last page was a surprise where I wrote "It is (his name)."

When he came to that last page, he read it out and promptly said "That's me! That's me!" with a very big smile on his face. It was very funny to see his reaction! He wasn't the only one surprised cos I was surprised to hear him so naturally spurt out "that's me". I had never heard him say that phrase before. It's the little things like these that I treasure and that encourage me to keep on going.

Teaching him to pedal

His nap lasted longer than I expected, so I managed to write this post which is long overdue.

About 3 weeks ago, we started to teach him to pedal on his bicycle at the park. The exercise is meant to strengthen his lower quads, so as to lengthen his walking gait.

Actually, we've been trying to teach him to pedal for many months, if not a year. We had put him on his tricycle at home. We had very little progress.

Desa Parkcity Waterfront area leading to the lake

Then his therapist noted that he had grown, as kids do, but seeing him everyday, I didnt realise just how much he did grow. She suggested that we try him on his 'new' bike (with trainer wheels) and to do it at the park, where there's much more space.

 

So 3 weeks ago, we brought him to try out at Desa Parkcity, Lake Gardens, Titiwangsa Park and back to Desa Parkcity, over four consecutive days.

I was very happy to see the progress though slow. It was hard on our backs and hamstrings. The special bikes are expensive (more than RM1k I think) so we'll make do with "manual labour"!
Photo above and below: Views of the lake at Desa Parkcity

Initially his feet kept falling off the pedal and we'd have to bend down and put his feet back on the pedal very often. He slowly progressed to the stage where he could most of the time keep his feet on the pedal, as the pedal goes round and round. That's provided he's focused and not distracted by vehicles going past etc.

Then 2 weeks ago, I fell ill with food poisoning and a back log of errands to do before he starts his holiday programme, so there was a break from all gross motor exercises for 2 weeks.

So, when we resumed on Friday this week, it was kinda like back to square one. We had to start all over again. But fortunately, he picked it up faster this time around. He even managed to go two full rounds around the lake. We were very tired but I was very happy. I think it took us a hour to complete 2 rounds.

Today, we went again to Desa Parkcity. It was just me and him, without my helper this time. It was challenging without my helper. The light drizzle made it worse. He insisted on stepping out to the park in the drizzle when I didnt have an umbrella. The tears came and his "crying" volume went up, when I insisted we head back to the car for the umbrella. Everyone stared - it must have been quite a sight! I had a backpack on my back, carrying a bag of old bread (to feed the fish), carrying a wailing kid in a strange outfit (neurosuit) whilst pulling along his bike. But I digress so I wont finish that scene.

Photo on the left was at Titiwangsa, but he favours Desa Parkcity now

The drizzle thankfully stopped by the time we sorted ourselves out. My son and I made it in one piece around the entire lake (maybe 1km?). He did quite well in keeping his feet on the pedal. Now at times, I just push his back, allowing him to steer himself (instead of me pushing and steering together). At times, I also let go briefly, when we are going down a gentle slope.

Whilst he still cant push down on the pedals, nor adjust his seating position, he can at least keep his feet on the pedal when the pedal goes round and round as we push him...well, most of the time anyway.  It's hard work but it's all for his sake, and I get to exercise and enjoy the outdoors!

The discounted shoes didnt fit

I've quite a few things I'd like to write about but either haven't had the time (many errands to run before he starts his holiday programme) or because I've not been feeling too well.

I want to write about (1) my worries about his kindergarten (2) his music class last Saturday (3) his pedalling exercise (4) disruption to his routine and sleep (5) losing momentum (6) visit to the shoe shop (7) his 'new' aquarium. But he'll be waking up from his nap shortly for his smoothie and I've yet to have my shower, so I'll write briefly about the visit to the shoe shop.

In a previous post, I wrote that he's due to buy a new pair of shoes. It's a special pair, with special proprioceptive insoles.

I was expecting to get the deeply discounted display pair of shoes for Rm99 as that would be the next size up for him. So he tried that on. It just fits - without extra space. That means I shouldn't buy it. He needs a bit of extra space in front of his toes and by the side so he can grow into it.

He tried the shoe without insoles at first. He walked funny and on tip toes. He tried the shoe with a heel cup insole. He walked funny too but a wee bit better. He tried the shoe with proprioceptive insoles. He walked better and only occasionally tip toed. So we know he still needs the proprioceptive insoles. I bought a pair and he customised it for my son. Cost RM499.

The shoe size that he needs is a size longer and a size wider than the discounted pair. If I were to buy the pair suitable for him, we'll have to fork out RM999 (excluding insoles). His current pair had cost us RM799 (exc insoles). Inflation I guess. Even at RM799, it was very expensive. It had done its job, but I'm not going to spend 1k on his next pair. Such is the cost of doing our best for our special needs child.

I went round other shoe shops looking for a shoe to fit him. I suspected I'd not find any cos I've been through a similar exercise several times over the past 2 years. So it was that I just could not find any at Jusco, at Clarks, or at Treehouse. From past experience, I knew Bata/Bubblegummers wouldn't have any too.

His feet are 'thick'/high in the area around his his arch. His feet are a bit wider than the normal cutting locally sold. Further, with the inclusion of the insole, he would need shoes with a higher ankle support. Given these three conditions, the only option is to custom make his shoes.

I'll go to a local custom make shoe shop this coming week and have them measure and make. It'll be I think around RM200, which is a still expensive but cheaper than the imported German ones. The materials and design is of course of a lower grade, but it'll have to do.

A word about the local shop - it's along Jln TAR. It's a highly unassuming shop - I missed it twice when I was driving looking for it a few months ago. It's only half a shop, the other half shared with an Indian barber shop I think. Floors are bare cement. No deco to speak of, just basic furniture. Everything in there seems to be caked in soot from the pollution of the heavy traffic along Jln TAR. The designs offered seems to hark back to the 1970s. It's a world of difference compared to the German shop in MidValley! And that's reflected in the price! Dont get me wrong. I'm very glad to have been told of this shop - it'll save us a lot of money. If the shoe turns out good, I'll highly recommend it to other CP parents too.

I did find out about other local custom make shoe shops. One's in Cheras but doesnt make them his size (only from young teenagers upwards) and they speak only Chinese. Others I read about seems to be for fancy adult footwear (boots, dancing shoes, office pumps).

So, we're off to the Jln TAR shoe shop next week!

Craniosacral therapy for myself

I slept badly last night because my son ended up in my bed and I ended up with a very stiff body. 
This morning I was very reluctant to bring my son to the park because I really wanted to rest. In the end, we did go because the weather was good (cool, cloudy, no threat of rain). But I only managed to push him on his bike (with my helper) only one-third of the way around the lake in Tmn Tun park. My neck and body were stiff, a headache was starting.

I still didnt rest after the park and did some my errands. By 2pm, I completed most things and had a nap. Woke an hour later, expecting to feel refreshed or at least better. But I didnt. Soon, it really felt like the beginning of the flu. Throat was tight. Head was aching. No fever though it felt like I was having one.

I made an appointment with his CST therapist yesterday for a session today. I had made 2 previous appointments several weeks ago, but had to cancel as somethings came up. So this session today was 'overdue' for me. But I was contemplating cancelling it cos I really thought I was down with the flu.

Thank goodness I went ahead with it. It was amazing. After a few minutes, my headache disappeared. Half way through, I felt so much better. Better than the effects of paracetamol. I was very relaxed. At the end of the session, I felt a bit high. I'd forgotten the feeling of being high because I've not touched alcohol for several years now. But this was a good feeling.

During the session, she knew just which spots needed working on. At different times, there were different sensations ranging from rapid eye movement, buzzing, a warm feeling flowing, bright lights, being weepy (yes, I cried - CST works at different levels!).

This time, what I noted most was that I had several blockages released. It was odd.  My respiration would really slow down, until it felt like I stopped breathing. It wasnt a forced stoppage, but a gentle one. At times, I would then gently 'come up' for air and resume breathing. Other times, the stoppage was uncomfortable, and the stoppage would end with a strong inhalation through my mouth - perhaps those were strong blockages that needed to be cleared. I had experienced this before in qi gong and the teacher then had merely said that it's a good thing, without elaborating further.

Walking out of the therapy room, I really felt like a different person than when I had walked in. It's one thing to see the difference CST makes in my son, but something else when I experience it first hand!

Treadmill Training

It was suggested by the Neurosuit therapist that he does treadmill training. It's only in the past 5 weeks that I've gotten around to starting it. It was a slow start.

In the first week, it was merely to get him on the belt and to be comfortable on it, without it switching on the power. So, it was just to step up on it, step down from it, pretend to walk on it like how papa does his exercise etc. I think that was done twice in the entire week.

In the second week, I switched on the power. It was up to him if he wanted to get on the moving belt. He did very briefly. Then he wanted to watch the belt roll under, and to watch the embossed words on the belt move. I didnt expect that, but whatever! So long as he's interested, not scared of it, I'm supervising and he's safe. I think that was also done twice in that week.

In the third week, things started going. On the first day of that week, he walked on it for a grand total of 2 minutes! The second day, it was... 1 minute. Not good. Third day, decided to place laptop in front of treadmill and pull up some car related videos from YouTube - car races, car crashes, car accidents. He requested for car accidents - it wasnt my idea. Hey, whatever it takes!

Problem with that is that the running time of the videos are very short, e.g. 2-5minutes and broadband in Malaysia often feels like dial up 38kB.  It was a challenge to get him walking for more than 10min without stopping. Note those 3 days weren't 3 consecutive days.

I had to get my helper involved. I would have my arms around his chest to act as a safety harness. She would move his legs in the correct gait - heel toe motion, leg striding to the front and not to the side, longer stride and not a trotting motion. It required both of us to be in a bit of awkward position. I'd be straddling across the width of the treadmill with knees and torso a bit bent. She'd be seated on the floor, to the side of him with arms stretched across to reach both his legs.

Back to the thinking board on how to achieve a longer walking session. Perhaps a portable DVD player? Scouted around for prices. Too expensive. Then realised I could use my laptop. How silly not to realise it earlier cos by which time, it was into week 4.

Left: Wooden shelf from Ikea across 2 chairs = bench

Right: 2 large containers from Ikea = table

Happy that we didnt need to buy anything new for this exercise

Now that we had a better feel of this, we set up a makeshift bench for me to sit and a make-do table for the laptop. He is now able to hit the 30min mark, but with several breaks in between. I reckon if we can keep this up regularly, he should be able to have fewer breaks, and be able to increase the walking speed to a running pace - a slow process but we'll get there eventually. Currently we alternate between a moderate walk and brisk walk speed.

I now believe this treadmill training can improve his gait. When we were doing this regularly, before I came down with food poisoning, I noticed that he was able to do the heel toe motion with his right leg (the problematic leg) after the first maybe 15 minutes on the treadmill, without my helper assisting him. We still have a long way to go, but I feel we're definitely on the right track and I'm happy enough with that.

Upcoming book sale

A friend notified me of the upcoming book sale- the Big Bad Wolf Book Sale.

Date: 26 Nov - 2 Dec 2009
Time: 10am - 9pm
Location: Level 3, Amcorp Mall, PJ

Website: http://www.bigbadwolfbooks.com/

From their website, it looks like the prices are cheap. I didnt go to their previous sale, so I hope they've got good quality picture books with large print, and books with high quality illustrations.

I've kinda given up searching for commercially sold early reader books that are suitable for my son. Instead, at the recent Pearson's warehouse sale, I bought just a few books (less than 5) that have a high repetition of key words, with very few words on a single page, with large print.

Two of those books were DK and he does like them. Those books are actually targetting kids younger than him and I believe it was not meant to be used to teach reading.

But, I use whatever resources I can find. I've given it a try and it's helped him learn a new high frequency word "are". He's getting reinforcement on the word "do". He's learning punctuation like the "question mark" and the "hypen".

I'm also trying to catch some words in there which can be blended and which can be categorised in the "Montessori blue series". Most importantly, he likes the book because he finds it funny. It asks silly questions to which he already knows the answer - e.g. Do cows bark?  Are elephants tiny?

He's picked up new vocab "tiny" and "huge". I usually use the synonym "small" and "big" and moved on to "little" and "large". So that's the good thing about exposing him to lots of books cos he'll pick up more vocab.

Tonight, he asked "what's that" pointing to the series of circles on the page. I said "That's the thought bubble". He replied "what does that mean, mama?". So I explained it.

I'm very happy that he's begun to ask questions, is curious and likes books. Those are the reasons why I'll definitely check out the book sale even though he already has a lot of books!

Day trip to Genting

Husband took a day off work today & we drove up to Genting. Tried booking last week but no rooms available for a night's stay. So just a day trip today.

Too much to describe of the day. I'll just say that he really has grown up and he thoroughly enjoyed himself. He went for all the rides in the Indoor Theme Park that were suitable for his age, except the Reindeer ride which he just didn't want.

For me, the highlight was him taking the Eiffel Tower ride all by himself - they dont allow parents in (car has just enough space to fit a 6-7 yr old kid).

For him (and my maid and sis), the highlight was Snow World. I forgot how cold it gets when it snows. I like it cold but not that cold.

on the monorail ride

waiting for the Mini Train ride

Waiting for the Eiffel Tower ride- it's a bit fast actually, with sharp turns too. Definitely at a faster speed than the other rides he took with me.

That's him at the end of the ride...he's in one piece...phew! Note: he remained in that position throughout the ride, indicating that he was a bit scared.

High up on the ferris wheel, observing the activity below

Tried to sneak a photo inSnow World but got caught that's why so blurred

View while on Gondola ride

Kind and thoughtful friends

In the past week, I was very touched by the kindness and thoughtfulness shown by friends.

Peter and Jane books
On Friday, a mother of a special needs child whom I only recently got to know gave us her whole collection of Peter and Jane Ladybird series! I hadn't realised that she read my blog about my son learning to read. She thought of my son when she was doing her spring cleaning and came across those and books to teach Chinese.

I was taken aback by her kindness as it's a small fortune in that entire collection! On top of that, despite being busy, she spent a few minutes listening to my concerns on selecting a right kindergarten and shared her experiences. I always find the sharing of other mother's experiences valuable, especially those who have an appreciation of how the needs of special needs kids are so different.

Kindergarten Sports Day

Then there was an invitation from my friend who's a kindergarten principal to attend their Sports Day (this morning) even though my son doesn't go there.

Unfortunately, my son had slept very late at 11.30pm (cos celebrated my sis' birthday!) and slept badly last night so he woke up late. By the time we joined them at the Sports Day (9.30am), he missed the games for kids his age.

Despite her being obviously tired from running the Sports Day, whilst in the midst of clearing up, she continued to show kindness by taking a moment away to take a few photos with us and his music teacher.

Playgroup Concert

A few days ago, I had received a call from the person in charge of the playgroup which my son used to attend last year. I hadn't heard from her for a long time but she still remembered my son. She invited us to their Concert (early this afternoon) even though my son no longer goes to their playgroup.

We went home after the Sports Day for my son to have lunch before we went for the concert. We managed to catch the Letterland presentation. I was amazed that most of the kids, younger than my son, were so brave to be able to stand up on stage to sing their part.

Appreciation

I'm very thankful to God for the kindness and thoughtfulness shown to us. Similarly, I hope to be able to bless others in return, through my words or deeds. I pray too that my son will be surrounded by such kind and thoughtful people throughout his life, and for him to appreciate good friends, and for he himself to be a good friend to others.

Fine Motor Activity: Lacing card (homemade)

Lacing is a common activity for fine motor practice, one which he never liked (and which I didnt do much of).

The lacing cards and lacing frames that I've seen sold at the shops (and those used in kindergartens) just weren't interesting, so I never bought them knowing that he too wouldn't be interested.

At our session with the new OT, I realised that I really should now have lacing activity higher up on my list of OT activities. It'll help as part of developing his skills for handwriting. I think I had come across a homemade lacing activity card on http://www.babycentre.com/ several weeks before the OT session, so the idea of making my own using previously cut out pictures of cars came naturally to me.

He loves cars, so I used it to entice him to do the lacing activity.

The little red and white men on top of the car are clips/pegs

(freebies) which are good for finger strengthening

How to make a homemade lacing card activity like the one shown above?

- Cut out an attractive picture or photo of items (cartoon characters, vehicles, or recently visited place) that interests your child from magazines, leaflets, brochures or the internet. Since my son finds it difficult, I chose a large picture. As he becomes more proficient, I'll make new ones that are smaller.

- Paste it on a cardboard / art paper. Cut closely around the edges.

- Use a perforater (hole punch) to make as many holes as desired. For a start, I punched the holes near the edges. As he gets better at it, and when using smaller photos, I'll make the holes further away from the edges.

- Find an old pair of shoes (that has laces), which you do not use anymore and remove the lace. Alternatively, just go to a shoe shop (e.g. Bata) and purchase a pair. If you buy it in white, you'll have the option to dye it (add food colouring). In the photo above, I used the lace from another store-bought toy.

- Compare the size of the holes you made and the thickness of the lace. If the lace is too thick, just punch a new hole just beside the previous hole.

Making it was the easy part. The hard part was to get him to do it! Having a picture of a car did get his attention, but when he realised he had to lace, he was instantly turned off. Perhaps he still remembered that it's something he can't do. No point forcing him then. I think the Montessori style allows the child to gradually get used to a new activity e.g. teacher brings it out simply to allow the child to explore, without requiring the child to perform the desired activity. Then on a another day, the teacher shows how its done. Anyway, that's the idea - that it's a gradual process. But dont quote me on that cos I'm not trained in it!
The second time I brought out this card, he wasnt instantly put off. So, I very quickly demonstrated it to him. Only managed to lace through 2 holes before he lost interest. A bit discouraged, but can't give up.

The third time (each time, on different non-consecutive days), it happened to be raining. I grabbed that opportunity and made a story that we've to close up the holes in the roof of the car by threading the lace through them or else the rain would get into the car. Very silly! But it worked! He was hooked. So it came to be that he had to thread through the hole in the tyre or else it'll go flat. Holes at the doors? Cold air conditioned air would escape! Undercarriage? Oil would leak! Radiator? Radiator liquid leak! etc.

I've brought it out a further one or two times since then and I do the same routine. He's improving slightly and I'm assisting him a little less. I know that with practice, he'll get better.

Horrid stomach flu

That's what I had - the stomach flu - and that's the reason why I've not posted anything the past few days. It was so bad that I spent 90% of my time asleep or on the toilet bowl. My colon was totally cleaned out - talk about detox! Doctor says it's a virus, which explains the painful tummy spasms, fever, body aches, and of course bad diarrhoea. Still, I'm glad it happened to me and not my son (and that I didnt pass the bug on to anyone else at home).

The fact that I am writing this post, means that I'm well on the road to recovery though I'm sure it'll be another 5 days or so before my tummy is really back to normal.

What have I learnt these few days?

- I should be careful of what I eat. Stating the obvious there! Being Malaysian, there's food anywhere and everywhere at whatever time you choose and unfortunately we're so used to less than acceptable standards of hygiene.

- My helper is still reliable despite the issues we had with her the past few months. Every evening, my husband will ask "what did little boy do today?" and my standard reply has been "I dunno. I've been asleep most of the day."

- I still need a helper even though things are easier now that he's older. He's not as independent compared to many of his peers and I do not have relatives nearby to support at times when I'm sick.

- Good long deep restful sleep can really refresh and restore you. Ever since he was born (and he's now 4) I hardly had restful sleep. I'm soooo grateful that I got the rest I needed and am ready for a busy weekend ahead.

Fine motor activity: stickers

If you shop at Guardian, Giant or TMC, they currently give out stamps (stickers) for every RMx amount purchased.

Over the past month, I've collected quite a lot of those stickers. I do not intend to redeem the stickers for anything from the shops (except for a soft toy from Guardian, simply because I bought many tins of his expensive milk powder which had a good discount)

What I intended to do was to use them for my son to practice his fine motor. It's a 'free' activity if you do shop at those places.

I chose to only keep the Guardian card on which to stick the stamps as it seemed less daunting - up to the number 40.  The cards of the other shops has over a hundred little boxes.

He does only 5-10 stickers at a time after which he seems to lose his patience. These stickers are easier for him to peel off as he just needs to bend the backing paper. Proper cartoon sticker sheets or sticker books are a bigger challenge for him because he has to be very precise on where he places the fingers of both hands.

Furthermore, the backing paper here is very narrow so it is very much easier to manouvere. For large sticker sheets, he struggles to peel off the stickers in the centre of the sheet.

He still has difficulty adjusting his wrist to get the sticker into a horizontal position prior to placing it in the numbered box. I sometimes hold his hand and adjust the positioning.

He no longer wants to paste the stickers sequentially. I'm not sure if that's because he's bored with doing so, or because it's hard for him to focus when there are so many numbers on a small card. So, I use my fingers to cover the other numbers on the same row and the row below, which does help him paste it on my chosen target box.

Apart from fine motor benefits, you can use it to teach numbers. You can do straight forward numbers, or do counting two by two, or three by three etc. You can use it for sequencing e.g. blue, orange, green, blue, orange, green...what comes next?

You can also teach them the concept of delayed gratification with this, cos you'll need a lot of patience as you may need to collect lots of stamps before being able to redeem anything useful (you may need to create some excitement to keep your little one still interested)

We first did this activity last year when Guardian ran it in conjunction with the 80th anniversary of the 100 Acre Wood (Pooh Bear). So, if you happen to miss this, just wait a while for them to run it again, or just keep an eye out for other retailers who might run a similar redemption programme.

Day trip to Awana and Genting

Woke up to a glorious morning today. Clear blue skies, fluffy white clouds, no haze, no threat of rain. It's the rainy season now, so it seemed like I had to take advantage of this beautiful weather. I wasnt keen on heading to the park for his usual exercise. (He still occasionally cant put himself back to sleep at nights, requiring me to carry him for a bit. He's 16kg now).

I got on to the internet to search for locations locally that would interest my son, be it parks or otherwise. We had been to the usual places - playgrounds at Lake Gardens, Titiwangsa, Taman Tun, Desa Parkcity are all too familiar to him. He's also been to the Butterfly Park, Bird Park, Hibiscus Garden at Lake Gardens. Other places weren't suitable because he's not old enough (Science Centre, PetroSains, Aquaria) or too smelly (he'll vomit at Deer Park and National Zoo!). I welcome suggestions from readers!

Awana Genting was shortlisted as a possiblity for a short family holiday. So I got on the internet again to find out if there's much that toddlers/preschoolers could do at Awana. Sadly there was hardly any info.

We decided the best was to just head on out to Awana after lunch to assess for ourselves! It was only a 45 minute trip to Awana, using the new DUKE highway. No traffic.

We didnt get to see any bedrooms but was informed by a friend that it's nice. Based on what we saw of the public areas of the hotel, it seemed like it could do with some renovations (but was still acceptable based on Malaysian standards). Strangely my son didnt seem to mind, unlike the time we brought him to a 4-star hotel in the East Coast, where he whined and wanted to leave. This time, he was very happily running zig-zag as though he had broken free from prison (perhaps it's because he was very bored at home this morning while I spent hours on the internet)!

Shame that Awana does not have a brochure of the layout of the resort or of places of interest nearby, the way they do for other hotels. They only had a large aerial shot with locations marked up, on the wall near reception (no sign postings or road demarkations). It was clear though that apart from the resort's swimming pool (which was under renovation) and playground, there really isnt much else for him at the resort. It's target clients were corporates (for teambuilding) and golfers.

We decided to take the cable car up to Genting as he's never been on one before. He enjoyed it. The clear weather stayed on and visibility was good. It was refreshing. He didnt show signs of vertigo, unlike my helper!

We took a bus ride from the cable car drop off point (Highlands Hotel) to First World, where the indoor attractions were. We wanted to know what rides if any would be suitable for him.

It was crowded, it being Sunday, but was bearable, probably because it's the low season and already 4.20pm by the time we arrived at First World. We searched for a suitable place to feed him his snack. By the time we all had our toilet stops, snacks and drinks, and orientated ourselves to the surroundings, it was 5.20pm.

He was very fascinated by the ferris wheel. I guess his fascination with any vehicle that has wheels, extends to the ferris wheel!

Luckily they had a "Pay per Ride" option instead of just the One Day Pass. It was a "long" wait (it's far worse during peak season) - queue to buy the ticket (RM 16 in total, for him and for me) from a counter at a different location, head on back to the queue for the ride, waited and waited for the line to move and the ride itself was just a fraction of the time compared to the time and effort to get onto it...but it was worth it. He was very happy! He was taking in all that was going on around him. Sensory overload for me! I've a bit of vestibular and auditory sensory disintegration.

Thank goodness that while we were waiting, my husband had gone on to scout for a suitable place for dinner. It was 7pm and I was hungry by the time we decided on the restaurant. It was unusual that he didnt want to eat his fried rice. It was tasty. He had some soup to go with it. He just didnt chew beyond the 3rd spoonful. I wonder if it was due to sensory overload or if he was still full (he snacked later than usual). I tend to note such things because he had (has?) feeding issues and mild sensory integration issues.

He didnt go hungry as we topped him up with 3 ounces of milk. Why, yes, we brought along his milk powder, water, milk bottle for mixing, spoons to feed him with, on top of his change of clothes, a sweater, a vest, diaper, wet wipes, plastic bags to dispose of dirty diaper, tissue, toy vehicles, handkerchiefs and bibs for feeding, hand sanitiser, water bottles for us adults...everything but the kitchen sink, all for a day trip! The load of the 2 very stuffed bags were shared between my helper, my sister and I.

Stepping out of First World to catch the bus to the cable car station, we were blanketed with heavy cold mist. Couldnt see beyond 12 feet! We also started off the cable car ride back down in thick mist, giving it a belated halloween-ish-haunted-mansion-ride feel to it...and not once did he say "ghost"! It was a treat for us to experience such cool weather - it hit a cold 20.6 celcius, by the time we headed home at 9.20pm.

And the outcome of our scouting mission? He said that he was "super duper happy" and would like to come back! So, we'll be making it a 2D/1N stay the next time! He was keen to try the monorail and train ride but we didnt have time. We think there are a few other similar rides that he'll like too and we might try the outdoor theme park. We'll likely stay at Genting itself, and not Awana - also for conveniece as he'll need his afternoon nap.

I'm very glad that he enjoyed himself - that made everyone else happy too. I was truly pleasantly surprised he wasn't scared of the bright lights, the loud music, the noise, the crowd, the rides. I was amazed that he wanted to go on a ride and acutally enjoyed the ride! It felt like he had grown up and was just like any other 'normal' kid. Such blessings!

Upon being buckled up in his car seat for the trip home, he fell asleep within 10 minutes. He was tired but happy. Sweet dreams honey (and dont wake up til it's morning)!

FGA PSG Sports Day

We went for the Sports Day organised by the Parent Support Group. I expected to stay for only a short while cos he doesnt like noisy places. It turned out far better than I expected. We stayed the entire session and on top of that, he participated in a few events with me accompanying him.

At first, he was very hesistant to even go near the event, stalling every few steps while heading to the group of people. He didnt want to participate in the first 2 events. But when I told him that I'd go together with him, he changed his mind and joined in the rest of the day.

There was a very friendly 7 year old boy who stuck close to my son, wanting to help him, cuddle him, sit with him for snacks etc. There was also a 12 or 13 year old boy to liked my son, who kept saying hello, pinching his chubby cheeks, asked about him, etc.

I think the Sports day gave him some new experiences, mostly "sports day" related:
- lining up
- performing a task, then going to the back of the line
- doing some new tasks (e.g. "egg and spoon" race)
- listening for the whistle for the cue to start & cue to finish
- exposure to a small crowd

The organisers wanted to send a message that it doesnt matter if you didnt come in first place, as the teamwork and effort are more important, cos everyone got a medal (2 teams, so it was either a gold or silver medal!). I reckon he's still young and does not yet appreciate this fact, though he does understand that in a race, there is a first place. (My son and I used to race to the sink to wash our hands, upon coming home)

He behaved very well. No temper tantrums, no crying despite it being hot, crowded, noisy and at times a bit confusing (typical of sports days really, but today's was considered very well run). There was a gazebo which provided some shade but most people were seeking shade there, so it was crowded there, despite it being in an open area.

He didnt speak though other kids and mothers spoke to him. This is something I expected. He has yet to build up his confidence in speaking to strangers. I suppose this will be developed when he starts kindergarten.

He was definitely happy with receiving a medal (everyone gets a medal) as he kept looking at it, turning it around etc. He was surprised to receive a second medal (for the family game - again every participant receives a medal) and he did the same, looked at it, turned it around, kept on holding it.

It was very well organised and I'm sure everyone had an enjoyable time. Looking forward to next year's!

Visit to Dentist

My son has oral defensiveness, a term to describe his sensitivity to anything to do with his mouth or area around his mouth. I've written in the past that he hates brushing his teeth. The area around his mouth can't be wiped clean after he's eaten, or else he'll vomit. So when it comes to having my son visit the dentist, I'm very nervous.

At the first visit slightly over a year ago, he cried badly until he vomitted. Back then, he generally vomitted easily during feeds or when he cried a bit too hard and he then still had a strong phobia of anyone in the medical profession (e.g. wears a mask, a white coat). The dentist only managed to have a look inside and to give advice on a particular tooth I was worried about.

At the second visit slightly over six months ago, he didnt even want to enter the premises. Just walking on by the roadside he sensed fear, even though we were about a shop away. He has good memory! That was despite me having bought a book (Harry and a Bucketful of Dinosaurs, on a visit to the dentist) to talk to him about it, prior to the visit.

This time around, the night before the visit, we mentioned that he'll be visiting the dentist, to which he said "I'm a little bit scared". Wow, just a little bit scared - that's a whole lot better than I expected. The next morning, I told him that it'd be myself and my sister who'd have our teeth cleaned too. I prayed the night before the visit and the morning of the visit, for peace to be over him and to remove the element of fear.

It was highly unusual - he was such a brave boy at the dentist today. He allowed the dentist to not only check his teeth but also clean them all, without whining or crying. This was a very noteable difference compared to the past two visits.

On the matters discussed:
- his problematic tooth is only decaying very slowly. The enamel had worn off and the yellowing is the hardened dentin. (we knew that from previous visit but good to know it's not worsened)
- that decay would not affect the permanent tooth that'll come out in that place
- we should continue to cut down on Pediasure milk which is very sweet. We could consider swtiching to cow's milk or soymilk (if we're concerned he might be lactose intolerant like me) which still contain calcium.
- continue brushing with Kodomo, but just use a tiny smudge of it
- it's ok if he doesnt rinse or spit, his teeth are still cleaned
- noted that his gag reflex has lessened

It of course helped that
- the dentist was gentle and has past experience with special needs kids.
- a TV was placed for the patient's viewing and turned on to Nick Jr.
- he had one of his favourite toy vehicles with him (a Toyota jeep)

Next visit scheduled in six months' time and I sure hope it goes as well as it did today.

Progress of his speech: Other languages, echo and Brag Book

Picking up bits of other languages

We are pleasantly surprised that he's picking up a second language, Bahasa Malaysia. I speak that to my helper and I guess he's been listening in. At times my helper does speak it to him, just for fun, but most of the time, it's English. He also likes to watch a local animation series, Upin dan Ipin, spoken in Bahasa.

Currently, whenever I ask my helper whether there's something or other in Bahasa, he'll chip in his two cents worth. While at the supermarket a few days ago, I had asked my helper "Masih ada Special K tak?" (Do we still have Special K cereal bar?). He replied "tak, tak, tak, tak ada" (no, no, no, none - which was true) even though the question was not directed to him.

At other times, he'd respond "tak dapat" (cannot) to questions from my helper. This morning, after his shower, he asked for his "seluar" (pants). I was surprised...perhaps my helper had taught him that word. Perhaps he's knows more than he's letting on!

So now, we try speaking to him a bit more in Bahasa and on the rare occassion, in Mandarin. My husband's the one who's good in Mandarin and has taught him to count in Mandarin.

Echo
He's also being our little echo. He frequently echos what my helper or I say throughout the day. I'm fine with that cos I think it helps get him more speech muscle practice.

His Communication book (Brag Book)
Last week I came across an old document in my stack of papers to sort out. It was his "Brag Book". It'll put what I wrote about the progress of his speech in previous posts, into a better context. This bBrag Bok was suggested by his temporary speech therapist (as his usual therapist was on maternity). It basically lists down the words that he can say, and his pronounciation of those words. It's meant to track his progress and help his teachers understand him better when he goes to kindergarten.

That Brag Book (a simple Word document, really) was created in early August 2008 - he was then 2 years, 8 mhts. It had very very few spoken words (just 27) compared to his peers. In the list, were single words like papa, mama, banana which were pronounced quite well.

But most other words were hard to understand.
For example five = ffff; sheep = seep-pa; up = up-pa; two = hooo; manggis = mm-chiss; me = mm-chee.

Today, he probably has several hundred spoken words. I stopped keeping track after he hit 40+ words. Some of those words, he can now say well, for e.g. up = up, sheep = sheep.

We still have a long way to go in helping him speak in sentences and to get his speech intelligible. It's a slow process, but we're making (good) progress. He needs to build up his confidence too when speaking to persons other than myself or my helper. But, I'm still very happy with his progress.

Faith turns to sight

"Her faith is turning into sight" - that's the phrase taken from my friend's husband's sms, updating us on my friend's condition. Today, a dear friend has gone to be with the Lord after battling with cancer. She was part of my cell group, back when I was having a closer walk with God. She was incredibly thoughtful, compassionate, of strong faith, and God's love and light was clearly shining through her.

I will forever remember her for those qualities and for one particular event about a year ago. Over a year ago, she started treatment for the recurrence of her cancer. Despite all that she was going through back then, she still remembered my son and I - she wanted to introduce me to a friend of hers, Evelyn, who is also a mother of a special needs child. But due to the side effects of the treatments, our meeting was delayed a few months. Yet, she never forgot. Yet, she was very determined and made such an effort to visit us together with Evelyn.

It was from that one very thoughtful and determined effort of hers that I have come to receive much support in helping my son. During that visit, Evelyn called up to enquire of a music teacher who used to teach her son. That music teacher is now my son's music teacher. He, is another truly special child of God. He's far more than just a music teacher. He's an educator, with great talent, creativity, patience and insight into childhood development. To top it off, kids like my son have a special place in his heart.

It was then from the music teacher that I came to know of the Parent Support Group for Special Needs Kids. I've not only learnt much from their seminars, but received vital emotional and prayer support from them. It's honestly very hard for most parents of 'normal' kids to relate to the different challenges faced when it comes to special needs kids.

It is from the music class that I got to know a mother who's a kindergarten principal. She too has a very kind heart and has been very helpful, despite being so busy, by providing vital resources and advice in helping me develop my son's literacy skills.

So from that one visit, those are the remarkable ways that God has blessed our lives, ways that would have been unimaginable to her at the outset. Truly, she has been a blessing to us. I have no doubt that there are many and far more touching testimonies of how she has blessed others. She will be very much missed but at the same time, I'm happy that at the end of her journey on this earth, she's with our Lord, where she'll forever have joy, peace and eternal life.

Progress of his speech: A peek into his mind

Now that he's speaking a lot more, we are getting more insights into his development. And we are getting more entertainment value from his speech - he makes us laugh with some of the things he says!

I'm so bad at remembering the stuff he says throughout the day that makes my helper and I laugh, that I wish I could go round with a voice recorder the entire day, just to record those spontaneous things he says.

I reckon I'm forgetful on this aspect because I've so much on my mind. My poor husband is missing out on all the insights into our son's mind...perhaps he could spend the entire day with my son to experience the joy and funny stuff, for himself, while I try to clear out my backlog of errands and "To Do" list!

An example that gives us a peek into his mind:
"After your nap and a smoothie, we'll go to the club for a swim."
"I don't know how to swim. I see only (I'll only watch others swim). I play water (I'll just play in the water). It's too cold (he's not used to the cool water)."
"No, the water won't be too cold. It's hot today."
"Ooh, so hot today!" (he makes some body movement to show that he's hot)

Another time, my helper was messing around with him as he was about to have his nap and lay in bed smelling his blanket (he loves his blanket).
"You talk to your blanket la"
"No, no, no, blanket cannot talk"

A few minutes later, she went back into his room & he was still smelling his blanket.
"Go, talk to your blanket"
"Blanket no eyes, no mouth, no face, cannot talk."

Last night, I was trying to 'catch' a toy magnetic fish with a fishing rod from another set, but the magnet wasn't strong enough to lift up the fish. Each time I tried and it fell off, I said something like this...
"Oh, no! It fell off again. Ooohh, I'm not good at this game. It's so hard. Eeeh....I caught one...here it comes up....oh no! It fell down again"

After several times trying, he responded:
"try again, try again, try again, don't give up"
It's the second time he responded that way. I wanted to teach him not to give up, which is very important in life, especially for him. I'm really glad that his music teacher had created that song, which I had reinforced a few times at home in different scenarios. So now, it looks like he has correctly absorbed the concept, which is a first step. I hope he learns to apply it from early on in life too.

Progress of his speech: He's asking questions!

I had more than 6 months ago (approx), asked his speech therapist why she thought it might be that he wasn't asking questions the way other 3 year olds would. And I had asked her the same question again a few months ago. I think it's common that kids go through a phase where they frequently ask "why".

She told me both times that it's because he would then be engaging in a conversation, requiring back and forth speech, requiring more words to be spoken. Back then he was only saying very short phrases and had to be coaxed to say them, and I would have been doing a lot of modelling for him.

She assured me that it's not because he wasnt thinking or being analysing things. She reassured me that his receptive speech and his cognitive skills are at or above his peers.

Well, I'll be most happy to tell her that he's been asking questions! No prompting needed. I think it started slowly, with just the odd question in a week and it progressed from there.

I think reading those homemade books have helped him too. There are 2 books where these questions were repeated frequently: "What is it?" and "Who is it?".

Other questions he asks:
What happened?
Where is it?

Although not said in a question form, he showed that he understood the meaning of "how". He had said, "I don't know how to (fall back to) sleep". Let me put that in context: he had just woken up in the middle of the night and couldn't fall back to sleep by himself.

There is of course no doubt that the Neurosuit has helped in his speech progress in the sense that it improved his breath length to enable him to speak more in a single breath.