Progress of Neurosuit & CST therapies

It's been some time since I wrote specifically on the progress of his Neurosuit therapy. I'll write on his progress of both the Neurosuit & CST as I feel it's difficult to attribute specific changes to just one or the other of these therapies.


1. Drool
There's definitely been less drooling. There are times in the day that he does not need to wear a bib for e.g. this morning when he's out and about at the shops.


At last week's speech therapy, he did not wear a bib at all but his drool did drip a little. It was just a little, probably requiring 5-8 times of wiping off with a hanky, which is very good.


He will still drool a lot when he's very focused on reading or a fine motor skill that's very challenging.


It was told that the Neurosuit would help him drool less eventually (initally there'll be more drool) & I guess we're seeing the results!


2. Breath & speech
He is voluntarily speaking more. It's not the incessant chatter of a chatterbox preschooler, but I definitely noticed he's initiating more and carrying on conversations. He's able to say things that I had not modelled for him to copy.


Just 4 evenings ago, we were in his room mucking about and his blanket was in his path. Out of the blue, he said this long sentence "Excuse me blanket, I want to go there". He then moved all over the room and when the blanket was in his path again, he said it again "Excuse me blanket, I want to go there".


The Neurosuit does indeed help his breath such that he's able to speak longer phrases/sentences in a single breath and to speak more often.

3. Balance

A definite improvement. Even his speech therapist noticed that he's steadier on his feet. When he's on his balance beam, there were a few occassions (just a few but that's already good) that he did not rely on me to help him balance. It does not happen often but the very few times that it has shows that he is progressing. Also, I noted he was able to bring his legs/feet forward comfortably on the narrow beam, without being so broadbased as before. I still have to hold his hand as he's not gained enough confidence yet to try the balance beam on his own.

4. Flexibility

He his less tight (spastic). He is able to move more like a 'normal' kid. It's still slow though but I think that'll improve with more practice and more therapy.

For e.g. he will now try to dance or follow the movements on Mickey's Clubhouse or Dora when they ask him to. We can also passively move his arms much easier. In the past, if we were to try to move his arms, he'd immediately retract them back or it'd be very difficult as it'd be very tight.

These are the areas we need to continue working:

1. Oral Motor

This is not addressed by the NeuroSuit. We're currently getting him to suck on the crazy straw & fat straw (the bubble tea straw) daily. He still bites down on the bubble tea straw but the bites are less hard. We occasionally have him suck from the tiny straw when I do buy Yakult for him.

He also has a wide variety of blowing objects. Different types of whistles, kazoos, feathers, toy flute etc. It's still very hard for him to get a sound out.

He plays with bubbles often. He again has a variety of different bubble wands to blow through, bubble pipes etc.

I try to stimulate the inner cheeks using the electric toothbrush. This is hard to do cos he resists having his teeth brushed in the first place.

2. Retained reflex of the arm

His CST therapist explained that his "bat wings" (arms) come up when he runs because it is a retained reflex of an infant which he has not lost. The reflex pattern movement to be done prior to putting on the suit is meant to address that. I did not know that.

I knew we were supposed to do it, together with the joint compression and massaging, prior to putting on the suit. But I didn't know that the reflex pattern movement was supposed to resolve the "bat wing" problem.

In the first place, it's already hard to suit him up. We've to do it really fast, while he's distracted in front of the TV. He dislikes the suit as it's uncomfortable (a lot of resistance training from the bungee cords & a lot of proprioceptive input from the tightness of the pieces & it's warm/hot especially in our climate).

I've to do what I've to do to help him. So we will incorporate the reflex pattern movement prior to suiting him up. Before that though, I'll need to get a working copy of the VCD showing how it's done. Both of ours get stuck half way through.

Evening walk-12 Aug 2009

It rained heavily this afternoon & washed most of the haze. Hooray! We get to go for our walk! Went early to the neighbourhood park with him in his neurosuit. Spent nearly 2 hours there!

Started off near the butterfly hill. Didnt climb the hill this time - we had done that this morning already. Instead he wanted to cross the road to get to the undulating greenery.

So we did. Moved around there. He copied me when I showed him what I mean by taking "big steps", "little steps", sideways walking etc.

He walked down, walked up, walked backwards down the slope...talked a lot, looked around a lot, macam macam today! I will write about what he said, in another post.

Eventually, got him to venture up the path to the very steep hill. Didnt take photo cos very steep. We climbed the shortest route up the hill as it's really difficult for him in to do so in his neurosuit now.

Half way up, was a small plateau where we stopped. Got to see this little gecko...or at least I think it is some kinda wild lizard-family creature!

At the top, it's rather uneven terrain, with mixture of swampy areas, grass, rocks...good for practising his balance. Spent quite a lot of time there. Walked mostly. Talked quite a lot too. Observed the large group of crows in the distance gathered at the high tension wires. Bent down to pluck some wild flowers.

Observed the big puddle of water. Saw the surface of the water move but no fish, tadpole or larvae. "Insect" he said, spotting some bugs skirting across the surface. Then he said "puffer fish" (I heard it as bubble fish at first...articulation needs working on). The kid has some imagination! "Small puffer fish" he says. Decided to play along, asking him if there was a shark too. "Small shark" he says! Then he changes his mind & says "Two big puffer fish...and one small shark"

Walked some more...trying to avoid puddles of water. "Small and medium and small... puddle...there and there and there" pointing to some of the puddles. Walked down to the proper sidewalk, stepped over demarkation ropes. He needed help stepping over, when he's in the suit. In the past, without suit, he can step over by himself.

Finally time to go home. "No...some more!" Hmm, he must feel deprived of his usual walks (the haze has stopped us from our outdoor activities). "Ok, another 20minutes". No argument from him. After 20 minutes, during which time he meandered around & greeted an old man who's a regular walker there & observed the noisy crows again....

"Time's up, time to go home".

"No...a little bit more"

"Ok, another 5 minutes more"

"5..6...7..8...9...10, 11,12,13,16,19,22,29,22,29,22..." He was negotiating for more time but he lost track of counting after 13. Eventually, he agreed to head home.

Saw this other distraction on the way back. Dunno why he was scared & moved behind me. He's seen them at home. So, showed him it's not scary & in fact he's the one scared of us. Showed him how it retreats back into it's shell when poked.

Since he didn't do much exercise for endurance earlier, I did little sprints & funny running to get him to follow. Looks like he still had the energy to run! Good!

Evening Exercise in Neurosuit-7 Aug 09

I was quite tired cos he woke up several times last night & I had an early start & errands to run today. But, after several days of bad haze, it finally cleared this evening with an added bonus of a cool breeze. So I didnt want to give up this opportunity to get him to the nieghbourhood park, but I brought my helper along (for back-up support cos by late afternoon, I had a bad headache, body ache, felt very heaty).

We were there for about 30mins. He did quite a variety of gross motor exercises, but in short bursts.

What did he do?
At the steep hill, he walked up (very challenging in his suit); walked backwards down (just 5 steps, then he turned around & said "too steep"; walked forwards down

At the hilly terrain, he walked & ran around

On the pavement, he walked/ran (alternating) all the way down past the houses. On his way back up past the houses, he walked backwards (we name it moonwalking), sideways, slowly, quickly etc.

I introduced him to counting by twos. Odd numbered houses were on one side of the road, so it's easy to introduce this concept. For e.g. starting at house # 5, I'd say... hey look at the number at this house. Let's add 2 to that number...and walk to the next house to get the answer . He wasnt interested beyond doing 3 houses. That's ok cos this is the 1st time I'm introducing it.

At the children's playground, he climbed the 2 rung ladder (with help), walked up the 3 step stairs holding onto both sides for support (but at least he could lift up his feet by himself, which is difficult in the suit), went down the twin slide with me, used his finger to "write" / follow the etched numbers (0-9).

I've just started to teach him to walk further forward at the top of the slide, before he sits down. He usually sits too far back at the top & needs to shuffle his bum a lot further forward before he can slide down. I believe it's because he's afraid of falling head first, down the slide. But now that I know he's better at balance & better at controlling his muscles, it's time to correct that. But i wont pressure him - only when he feels comfortable enough.

Speech
- apart from his usual speech he finally started to use the word "missing". Previously just says "oh-oh" to indicate something's missing/something's wrong. Each time, he uses "oh oh" for something that's missing, I'd say "missing" out loud & try to get him to say it instead of "oh oh". Being crazy over cars, today he said "missing...Toyota Unser" (he remembers there's usually a Unser & Kancil parked at the top of the road).

- when I climbed up the slide the wrong way (ie. as though I was climbing a hill), to get him to do the same, he said very loudly & clearly "COME DOWN!". I was very happy.

- on 2 separate occassions, he was trying to warn other kids on the opposite side of the road to look out for cars cos they were walking on the road instead of on the pavement. He said "be careful...got car". He wasnt loud enough or clear enough. He said it too fast, missing out some phonemes. I think he was excited. But, eventually I know he will be able to say it loud enough & clear enough. For now, I'm happy that he wants to & tried to communicate with others & that he knows it's dangerous to walk on the road!

To the beach!

Packed everyone into the car & went off to Kelanang beach today! This would be our 3rd or 4th visit this year. Traffic was good, weather was good - no haze, clear blue skies!

*will upload photos from hubby's handphone when time permits.

Benefits:

(1) Walking on sand gives him good tactile input & requires good balance.

(2) Walking in water gives resistance & challenges his balance even more (he'll happily splash around in ankle deep water, but if it's almost to his knees, he'll want to hold our hand)

(3) Talk about/show him the surroundings e.g. how the mangrove trees were different in terms of their roots, compared to normal trees. Showed him what animals live in a mangrove habitat e.g. crabs, mudskippers, fishes (cognitive, biology lesson)

(5) Catching crabs requires fine motor skills, hand eye co-ordination, faster reflexes. He caught a lot of crabs with his bare hands (with his fingers actually) during the previous visit. This time round, there were much fewer crabs & he wasnt interested. Instead, he was stomping on the crabs! Not to worry, he didnt kill them. They are much faster in burrowing themselves than he was in stomping them. Stomping with one foot requires good balance.

(6) Picking sea shells requires fine motor, hand eye, squat to stand, bending down. Later at home, you can use the shells in various ways: counting, visual discrimination, biology lesson, decoration during sandplay.

(7) Receptive language (speech input) - you can expand his vocabulary e.g. waves, tide coming in, estuary, hermit crab

(8) Expressive language (speech output) - he has the chance to use what he's learnt e.g. he surprised me by describing the clouds as "fluffy clouds", a term that I used only once, several months ago during a trip to the neighbourhood park.

(9) Bringing back sand for sandplay at home! There are areas on that beach where the sand is very fine & white.

(10) Sandplay at the beach itself of course! E.g. build sand castles, scoop & pour activities etc.

(11) Catching fish using a net requires very fast reflexes, balance, gross motor. We forgot to bring a net, so it was papa who caught fish using his bare hands. Papa the hero caught 3! We tried to help but fish escaped instead! : )

(12) Flying a kite requires gross motor skills, balance, visual tracking. We didnt bring the kite cos we knew we wouldn't have time to fly it cos we left much later than normal.

(13) Drawing/writing in the sand - doesnt require a mature tripod grip, so it's good to do this to let his creativity flow, without being hindered by his disability. Also good as a fun alternative to writing with the usual pen, pencil, colour pencil, marker, crayon, chalk etc on paper, whiteboard, blackboard. Fine motor skill still needed.

(14) A lesson in caring for the environment. Unfortunately, there was trash washed up on certain parts of the estuary (apart from the usual plastic, I came across a bottle, hard hat & tyre!). Use this opportunity to teach him that things should be disposed in their proper place or else it gets washed up on the beach etc & dirties the homes of the crabs, fish etc.

Note:
(1) We have to check to make sure the moon cycle isn't at the full moon stage cos the waves comes right up & there's no beach left. He's fearful if the waves are close to him.
(2) Bring insect repellant or at least wear long pants that can be rolled up. I was badly bitten.
(3) There's decent hawker fare at the purpose built "food court" but lots of flies
(4) There's a children's play area with the usual slides, climbing equipment etc.
(5) There's proper toilet but its yucky (very wet, smelly, no soap, sandy/muddy floor - some mums were rinsing their kids in the toilet). Bring your own hand sanitiser & toilet paper.

Resuming activities after illness

It's been 2 weeks of reduced activities due to his illness (& me being sick too). He completed his course of antibiotics on Friday. His last round of nebuliser was on Thursday night.


Butterfly hill
Yesterday we resumed his gross motor activity. Just had about 10min of outdoor activity in the morning at the neighbourhood park. We climbed the small hill (I named it butterfly hill) to look for butterflies but didnt find any this time. Instead we were counting wild mushrooms. Introduced addition of bigger numbers. E.g 4+3 = 7. He knows how to add one more, but not add 2 or more than 2.

I chose this form of exercise because after 2 weeks without such exercise, he began to walk on tip toe more often & his walk was getting broadbased. So, climbing hills (the steeper the better, within limits of course) would stretch his achilles, gastroc muscles etc.

The grassy gently undulating terrain there was also good for him - balance! Since he loves to run in wide open spaces, it was perfect. No need to persuade him, or think of ways to trick him into it.

Crash mattress

What is it?
It's basically a large sack (with side zip) containing chunky pieces of foam in uneven sizes. The sack is about the size of a single mattress. It's on loan from his therapist - many thanks!

Why?
Lately, he seems keen on walking & running on slightly uneven surface (his normal mattress with blankets, cushions scattered!) & he's getting better at it. So I repositioned his "obstacle course" to incorporate the crash mattress.

Benefits?
It's for his balance. To walk on it, he still needs to hold my hand. Its too tricky - pieces are never in the same place.

Both sick

This is an old posting which I had drafted last night (Wed, 8 July 2009) but didnt get to finish as my son woke up, coughed, vomitted badly several times....so, I'll just post it tonight, even though it's not completed.

8 July 2009

We're both sick. Started last night. Mild fever but was enough to cause a restless sleep for him, which meant I didnt sleep well either. But at least I had the luxury of sleeping in this morning.



So, we didnt go to Titiwangsa this morning, or do that much today. I'll instead write briefly about what he did yesterday (7 July).



7 July 2009


Titiwangsa


Played for a short while only as he said he was tired (probably wasnt so well already) & the sun came out. He did manage the following:

- 1 x on monkey bar slide

- 2 x walking up the stairs

- 3 x tunnel slides

- 1 x tunnel

- inclined ramp

- walked on the pebbled covered drain (uneven surface, good for balance)

- he did try the arched ladder, which he hasnt done for many months. It's a ladder but instead of it perfectly vertical, it is arched so the bottom of the ladder starts off vertical, and the top of the ladder ends up horizontal.



Gardening


Wasn't so sunny when we got home, so did a bit of gardening. He likes to help nowadays, so he picked up dried leaves & cuttings. Good for squat to stand, bending down, using left hand, hand eye.


He also said "thank you" many times, when i helped him gather smaller cuttings into a pile for him to pick up & carry to the bin bag. So, got in some speech there.



Car seat


I've been letting him try to climb up into the car & his car seat & get off too. Sometimes he's better than other times. He often needs help when he finally gets into the car seat but one leg gets stuck under him (he sat on his leg but cant pull his leg out). He's getting quite heavy for me to carry him into the car, so I better start letting him practice! It's good for balance, co-ordination, independence

Titiwangsa & others

Titiwangsa

Slides:
- still keen which also means he himself will want to crawl/climb whatever obstacle to get to the slide. As a result, he climbed more steps today.
- He climbed up the wrong way to get to the top of the baby slides & shorter tunnel slides, which is good for his achilles tendon, gastroc muscles etc.
- He's a bit bolder now & went down a tunnel slide with 1 1/2 twists by himself, without prompting!

Swing: been sometime since he sat on the swing. I showed him how to pump himself to get the swing moving, but he didnt try it, just observed my legs.

Long suspension bridge
- still likes it! A tiny bit better in getting up & down each level of the platform, though I still have to help him - e.g. he bends his knee more readily when coming down & when going up, his leg is placed a bit more in front of him instead of slightly to the side.
- yesterday he walked backwards on the bridge (moonwalking tribute to MJ!?)

Short suspension bridge: I increased the challenge by bouncing up & down on it to get it more shaky (cos that's how it'd be like if there were kids running past him). Good that he didnt lose his balance.

Spinning tops: He was a bit better on it today. Phew. It's also good for strecthing his legs (to help in opening up his stride).

Monkey bar slide: he didnt want to do it today

Suspended balance beam: once or twice towards the end of the beam, he managed to place his foot one in front of the other instead of squeezing them side by side. Hope he does it more cos that'll help get a more narrow based gait instead of broad based now.

Rock climbing:
- surprised he wanted to do it ! 1st time ever! And not just on 1 set, but went up 2 sets! I had never asked/prompted him to try it. Helped him with his footing, but was otherwise able to get up.

Visit to great grandma's
- Had a bit of time before lunch, so squeezed in a short visit to his great grandma's.
- realised there that he poo poo, so washed him. Poor thing, he must have been at the playground all the time with that icky feeling cos he did smell a bit when we got there but just thought he passed wind.
- he spoke a few words (e.g. thank you, purple, don't want) that were audible & intelligible enough for grandaunt to understand. Hooray!

Smell
- I taught him the 'thumbs up' sign for good last week. 2 days ago, taught him the thumbs down for bad. Today, after he passed wind (kentut), he said: kentut...smell BAD (with thumbs down sign!) So funny!

Cranial Sacral Therapy
- his therapist noted the front of his skull was slowly opening up a little. Not so sharp looking.
- he played with some toys that helps with fine motor & hand eye (click clack & chunky foam animal puzzle)
- In preparation of the NeuroSuit therapy, I learnt to massage him: up & down the sides of his spine, shoulders, shoulder blades, arms, legs & hip. He was so ticklish esp arms & shoulder blade. He complained towards the end...but he was ok lah.

Hair cut
- hair getting long, weather so hot, scrathing his head more often ... time for hair cut!
- thankfully he can still fit in his small bathtub, while I cut his hair. Gave him beakers to fill & pour. It's good for wrist movement & crossing the midline (told him that if he wants to pour the water out of the bathtub, he has to pour it in the pail I placed on his left - he's right handed)
- handsome now!

Garden hose
- I had diarohea this evening, so didnt take him for evening exercise.
- he helped with watering the plants, using the garden hose. Good for hand eye, arm movements.

Mega bloks
Didnt have time to build structures but played with it as follows:
- tried to unzip the bag, but couldnt. It's ok, it's the first time with this bag. Just needs more practice
- right hand took out individual pieces from the bag & placed it on the swing, while counting out loud & placing it in separate groups according to colour (speech, fine motor, sorting), I also got him to stretch by moving the swing a little further away each time.
- left hand put back all the pieces at the end (no counting)

music class today

Music Class
He started his weekly music class in Feb'09. He only became comfortable after 2 months there. Today, he was a lot more comfortable/confident – e.g. went forward to teacher when other students do the same without me prompting; he approached the teacher for the white board marker & wanted to draw even though not his turn yet

- Class starts with each child playing "Twinkle twinkle" with the teacher: he wanted to play it instead of being guided by teacher. He can’t as yet, so at times he played the wrong keys. It’s ok for now cos I do not practice that piece with him at home & it shows he’s becoming a bit more confident.
- he drew music notes but needed step by step instruction
- teacher gave him markers with different thickness to stretch his pincer grasp muscles a little
- he tried to clap according to rhythm (5, 6, se-ven, 8) but cant yet
- he "sang" simplified version of the minuette - teacher plays one note at a time & gets him to follow e.g. teacher plays the note "la" and asks him to sing "la"
- he played the chorus of "Old Mc Donald" (it's just the note "fa" repeated many times) on the mini keyboard & on the musical bell – he was better on keyboard than on bell. He could almost get the right timing with the keyboard
- he still grips the other children's hand too tightly during circle time - when he's excited, his muscles tighten.


Unlocking the door
- he needs to stretch up to reach up to the height of the keyhole;
- I've to place the key into the keyhole inside first, then he's able to push it in fully;
- he now knows the direction to turn the key when unlocking (anti-clockwise);
- he can now turn the key but needs help when actual unlocking (the "click" moment) because it's needs a bit more strength (wrist movement);
- after unlocking I've to pull the key out a little, then he can pull out the rest of the key;
- used his left hand to pull down the lever cos right hand holding key;
- balancing & co-ordination required (cos he’s on tip toe) when pulling down the lever & simultaneously pushing open the door

Painting
- He did hand printing, hand painting, painting with brushes of different thickness
- these help with hand eye, fine motor, grasping, creativity

Bananas in pyjamas
- today’s episode was all on nursery rhymes with action E.g. I’m a little teapot; Here we go round the Mulberry bush; Head & shoulders.
- we carried on that theme (action songs) in the restaurant while waiting for the bill

Dinner at restaurant
- I placed some ice chips on hands to stimulate senses
- He used both hands to grasp (palm grasp) the glass & raise it up & down. I allowed it cos it helps open up the palm & it wasnt a fancy restaurant
- We played games to get him to stretch arms wide open & high up E.g. when he spots aeroplane (it's outdoor dining), or sees a long bus pass by
- We made up games to get him to move his arms based on the cars passing by (we use his interest as much as possible)
- I tried to massage his muscles near his shoulder blade but he was too ticklish