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.
Showing posts with label NeuroSuit. Show all posts
Showing posts with label NeuroSuit. Show all posts
Sunday, November 1, 2009
Friday, October 9, 2009
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
1. Oral Motor
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.
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.
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.
Monday, October 5, 2009
Grocery shopping
It was just my son & I doing the fortnightly grocery shopping at Tesco this morning - I enjoy such times with him alone. I built in various learning opportunities whilst there, and he got his exercise with the Neurosuit.
Apart from the usual vocabulary building (naming of fruits & veg) the learning opportunities included stuff like:
- directions & learning to listen (turn left, go straight, slow down, look left/right);
- patience (wait while I choose an item, wait at the weighing counter & praising him);
- selecting veg & fruits (red tomatos are sweeter, hollow sounding watermelons are juicier);
- being aware of surroundings (watching out for other trolleys);
- doing what's right even when no one is watching (he accidentally knocked down some dog shampoo containers with the trolley, so I placed each one back on the shelves)
- it's ok to ask for help (couldnt find stuff)
- doughnuts are a special treat when it's on offer!
I got in 2 hours of these exercises in the Neurosuit:
- walking & pushing the empty and then heavy trolley
- running without the trolley
- walking sideways facing the trolley
- bending down to pick up things
- stretching his arms up to place things into the trolley
I unfortunately had an unpleasant encounter while at the check out counter. I'll write about it in my next post.
Apart from the usual vocabulary building (naming of fruits & veg) the learning opportunities included stuff like:
- directions & learning to listen (turn left, go straight, slow down, look left/right);
- patience (wait while I choose an item, wait at the weighing counter & praising him);
- selecting veg & fruits (red tomatos are sweeter, hollow sounding watermelons are juicier);
- being aware of surroundings (watching out for other trolleys);
- doing what's right even when no one is watching (he accidentally knocked down some dog shampoo containers with the trolley, so I placed each one back on the shelves)
- it's ok to ask for help (couldnt find stuff)
- doughnuts are a special treat when it's on offer!
I got in 2 hours of these exercises in the Neurosuit:
- walking & pushing the empty and then heavy trolley
- running without the trolley
- walking sideways facing the trolley
- bending down to pick up things
- stretching his arms up to place things into the trolley
I unfortunately had an unpleasant encounter while at the check out counter. I'll write about it in my next post.
Monday, September 14, 2009
Avoiding exercise!
In the past week, my son has realised that he can avoid or at least reduce the amount of exercise he has to do in his NeuroSuit.
He must have observed that when he was sick in July & August, he didnt have to use the suit. After that I was very careful in observing him. If he sounded like he had phlegm (early indication of potentially becoming sick), or if he coughed or vomitted consecutively (other early indications of being sick), I would not put him in the suit.
Later in the week, I started asking him if he was well or sick when the above indications appeared. I wanted him to be able to tell me (or later on, his teacher) if he felt sick.
He started telling me that he was sick. The first few times, I wasnt sure whether to believe him but I gave him the benefit of the doubt as I really didnt want him to fall ill again so soon.
Then when the "I'm sick" continued, and there werent any indications of being sick, I knew that he was avoiding exercising in his suit. I tested him out. Just 10minutes into our evening walk, I asked if he was well. His reply came as "No, I'm sick". So, I promptly said that we'll have to go back since he's sick. "No, no, no" he said. I asked again if he was sick. He replied, "No, not sick"
So my son is smart enough to have learnt to get out of exercising by saying he's sick! But I do closely observe him, in case he really is falling ill.
He must have observed that when he was sick in July & August, he didnt have to use the suit. After that I was very careful in observing him. If he sounded like he had phlegm (early indication of potentially becoming sick), or if he coughed or vomitted consecutively (other early indications of being sick), I would not put him in the suit.
Later in the week, I started asking him if he was well or sick when the above indications appeared. I wanted him to be able to tell me (or later on, his teacher) if he felt sick.
He started telling me that he was sick. The first few times, I wasnt sure whether to believe him but I gave him the benefit of the doubt as I really didnt want him to fall ill again so soon.
Then when the "I'm sick" continued, and there werent any indications of being sick, I knew that he was avoiding exercising in his suit. I tested him out. Just 10minutes into our evening walk, I asked if he was well. His reply came as "No, I'm sick". So, I promptly said that we'll have to go back since he's sick. "No, no, no" he said. I asked again if he was sick. He replied, "No, not sick"
So my son is smart enough to have learnt to get out of exercising by saying he's sick! But I do closely observe him, in case he really is falling ill.
Friday, September 11, 2009
In-your-face unsolicited advice & help
In the past even without him wearing the NeuroSuit for his outdoor exercises, we occasionally come across mothers with their kids in tow, who strike up a conversation. It doesnt happen often because our walks/exercises are usually on weekdays, when most mothers would be at work.
Now, when he has on his suit, he tends to attract more attention. That is fine by me, as most of them would be at a distance with a curious look on their face. I've got used to it.
Last Friday, at the Lake Gardens, a retired lady approached us while I was adjusting his suit. She was very direct, asking what he was wearing, with all the follow on questions from there.
I guess I entertained her out of politeness even though I was getting flustered, struggling to keep my son still enough so I could adjust his suit. What really got to me was when I realised she either wasnt really listening to my answers, or that she didnt believe me. I had earlier told her that my son can not only walk but run without the suit. After several more questions, my son broke into a run & she was totally taken aback by it, saying "He can RUN!". In my heart, I gave a silent "I told you!"
Turns out she's a retired principal who sold her kindergarten. She had a few special needs kids enrolled previously. She's now helping to raise funds for charitable organisations. She was very eager to help me without me giving the slightest indication of needing help. She took down my number saying that someone from the organisation will call me & share information on their contacts with me. She also gave suggestions implying them to be the miracle cure (do this & he'll be fine). For e.g.
- to improve his oral motor, get him to open his mouth wide & give a big hearty laugh.
- to help him catch up with his peers, get him to mix with other kids
Well, if only it were that simple, he'd be normal by now.
I know she has good intentions & meant well. I'm not in the least bit angry at her. In fact, there was a lesson or two or three in it for me:
I learnt that some people just love to give unsolicited advice to others. By helping others in that manner, they feel good inside. It didnt occur to them that I'm doing so much more with my son than what they think. However, in order for them to give help, there must be a party receiving the help. So, I decided that in future, when approached by such persons, I'll help them feel good inside by letting them feel they're helping me.
I've a new tactic to handle such situations too. I'll give polite short answers to their questions, without elaborating or explaining much. When they continue with more questions, I'll ask if they're from the medical profession. If they are, then I know how to cater my answers accordingly. Those in the medical profession would already be familiar with a lot of the terminology & saves me time & energy.
I've also learnt that I've to be careful myself, not to be one of those giving unsolicited advice!
Now, when he has on his suit, he tends to attract more attention. That is fine by me, as most of them would be at a distance with a curious look on their face. I've got used to it.
Last Friday, at the Lake Gardens, a retired lady approached us while I was adjusting his suit. She was very direct, asking what he was wearing, with all the follow on questions from there.
I guess I entertained her out of politeness even though I was getting flustered, struggling to keep my son still enough so I could adjust his suit. What really got to me was when I realised she either wasnt really listening to my answers, or that she didnt believe me. I had earlier told her that my son can not only walk but run without the suit. After several more questions, my son broke into a run & she was totally taken aback by it, saying "He can RUN!". In my heart, I gave a silent "I told you!"
Turns out she's a retired principal who sold her kindergarten. She had a few special needs kids enrolled previously. She's now helping to raise funds for charitable organisations. She was very eager to help me without me giving the slightest indication of needing help. She took down my number saying that someone from the organisation will call me & share information on their contacts with me. She also gave suggestions implying them to be the miracle cure (do this & he'll be fine). For e.g.
- to improve his oral motor, get him to open his mouth wide & give a big hearty laugh.
- to help him catch up with his peers, get him to mix with other kids
Well, if only it were that simple, he'd be normal by now.
I know she has good intentions & meant well. I'm not in the least bit angry at her. In fact, there was a lesson or two or three in it for me:
I learnt that some people just love to give unsolicited advice to others. By helping others in that manner, they feel good inside. It didnt occur to them that I'm doing so much more with my son than what they think. However, in order for them to give help, there must be a party receiving the help. So, I decided that in future, when approached by such persons, I'll help them feel good inside by letting them feel they're helping me.
I've a new tactic to handle such situations too. I'll give polite short answers to their questions, without elaborating or explaining much. When they continue with more questions, I'll ask if they're from the medical profession. If they are, then I know how to cater my answers accordingly. Those in the medical profession would already be familiar with a lot of the terminology & saves me time & energy.
I've also learnt that I've to be careful myself, not to be one of those giving unsolicited advice!
Monday, August 24, 2009
Botak Tree
He wore his NeuroSuit today as he's getting recovering well. But since he is still not fully well yet, we didnt want to him to exert himself. So we didnt focus on endurance. Instead, we got him to do stairs walking and simple movements (gross motor) just to ease him into suit therapy again. This is also the first time he's doing fine motor while in the suit.
Brought the mega bloks downstairs. He had difficulty unzipping the bag - will need more practice while in the suit. (fine motor)
He picked a piece and promptly threw it on the floor (kinda nice sound when it hits the ground)...and repeated it until all 80 pieces were strewn around. Yes, it was messy. But in the process, he had to bend to reach into the bag; he used his left hand when I prompted him; and bend at various inclines as he went lower & lower to get the remaining pieces. (gross motor, fine motor, hand eye co-ordination)
Once he got that "throwing" out of his system, it was time I directed the play, but with limited freedom still accorded to him. Asked him what he wanted to build. No answer. Floated some ideas...bus, car, train, house, tree.
"Tree" he liked that idea."Green and red...green and red tree" he laughed! Is it my imagination or is his volume a bit louder when he was in his suit today?
Here's where I sneaked in the stairs activity. Pieces were at the bottom of the stairs. We were going to build on the staircase landing, which is about 5 steps up. Each time we needed more pieces, he'd have to go down for more. I think its better start by going up & down just a few steps, but many times, rather than the entire flight & be so tired.
To challenge him more, I varied it by sometimes getting him to walk up without holding on to the banister, by placing a piece of blok in each hand. Of course, I had to help him a little by supporting his back. I was pleasantly surprised that he didnt put much of his body weight onto me, unlike when he's not in his suit & walking up.
Initially I let him walk up '2 feet on one step'. Later, I helped moved his legs to '1 foot on one step'. Then he was trying it himself. I'm happy cos it's so much harder when in the suit due to the resistance from the bungee cords.
He is more confident going down the stairs when he's in the suit - he walked faster.
When we were building together, I got him to place the pieces by himself & push down. He still doesnt really push it down well. He still sometimes uses his pointer finger to secure the piece down, instead of using the palm for bigger pieces.
He didnt want leaves on the tree. He explained "burned" (fire burnt the tree, so it explains why there are no leaves).
"But if the tree was burnt, it'd be black, not green & red" I was testing him.
He paused a second. "botak...botak tree" he reasoned. 'Botak tree' to him means a tree without leaves, referring to the tree we saw at the park which was tall & thin without a single leave. Hey, he's using his brain! Ahh, that made my day!
Sunday, August 23, 2009
NeuroSuit progress - end of Week 3
He probably wore the NeuroSuit for only one or two days this week. He was sick for most of this week. He's recovering well now, but his dr had advised to continue the nebuliser, with lesser frequency until Tuesday.
I've been observing his movements more this week, as I've done a lot less activities with him. Here's what I noted:
He's a lot more flexible in his movements.
He's been squatting more & for longer periods each time. He's able to lift up his leg with it at 90 degrees at the hip, or 90 degrees at the knee. He no longer lifts up his leg with both arms stretched outward for balance, looking like he's about to do a cartwheel! He's faster at getting out of the car by himself.
He can finally step over gaps by himself. He's been happily walking by himself on the steps I made using the foam alphabets puzzle pieces. In the past, he'd always want to hold an adults hand while stepping up and crossing over to the next stack. This was an objective set by his HUKM physiotherapist many months ago which we had a hard time achieving.
He is going up the 2 steps to his bedroom at one foot for each step, without needing to hold the wall. He cant do it coming down one foot on each step yet. But he can come down two feet on each step without holding the wall if both his hands are occupied (e.g. holding onto a toy).
He's walking & running gait is getting odd
In the past even though his gait was not normal, you could see a certain rhytm to it. Now, his gait is not smooth anymore. It seems like the placing of his leg/foot is not as automatic. He's getting into toe-walking again especially his problematic right foot. He seems to be losing his balance & tripping up more. We will start him on the suit later this week, when he's recovered more.
Speech
He's far more chatty. I love it! He'll never be a chatterbox, but he's come far in terms of expressive speech. He has his frustrations when I dont understand what he's trying to say - we're still working on pronounciation. Great to get peeks into what's going on in his mind. Wish I could remember the stuff he says so I could document them here.
I've been observing his movements more this week, as I've done a lot less activities with him. Here's what I noted:
He's a lot more flexible in his movements.
He's been squatting more & for longer periods each time. He's able to lift up his leg with it at 90 degrees at the hip, or 90 degrees at the knee. He no longer lifts up his leg with both arms stretched outward for balance, looking like he's about to do a cartwheel! He's faster at getting out of the car by himself.
He can finally step over gaps by himself. He's been happily walking by himself on the steps I made using the foam alphabets puzzle pieces. In the past, he'd always want to hold an adults hand while stepping up and crossing over to the next stack. This was an objective set by his HUKM physiotherapist many months ago which we had a hard time achieving.
He is going up the 2 steps to his bedroom at one foot for each step, without needing to hold the wall. He cant do it coming down one foot on each step yet. But he can come down two feet on each step without holding the wall if both his hands are occupied (e.g. holding onto a toy).
He's walking & running gait is getting odd
In the past even though his gait was not normal, you could see a certain rhytm to it. Now, his gait is not smooth anymore. It seems like the placing of his leg/foot is not as automatic. He's getting into toe-walking again especially his problematic right foot. He seems to be losing his balance & tripping up more. We will start him on the suit later this week, when he's recovered more.
Speech
He's far more chatty. I love it! He'll never be a chatterbox, but he's come far in terms of expressive speech. He has his frustrations when I dont understand what he's trying to say - we're still working on pronounciation. Great to get peeks into what's going on in his mind. Wish I could remember the stuff he says so I could document them here.
Sunday, August 16, 2009
NeuroSuit progress - end of Week 2
He's been wearing the suit most days, once or twice in a day, for about an hour each time.Haven't done most of the activities he's supposed to do in the suit cos he can only walk & run unaided in the suit. Slowly we will come round to doing them.
Changes noted while in the suit:
- able to stand in one spot, without his usual shuffling around the spot. I think it's to do with proprioceptive feedback from the suit
- takes slightly longer stride when running, rather than his trotting
- endurance improving slightly. Doesnt get tired in the suit as fast as before. Gagging, as an indication of being tired, is lesser.
- if we feed him while he's wearing the suit, he forgets to chew or swallow. This is not totally surprising cos the therapist says it's common that people forget to swallow their saliva when wearing the suit, at the initial stage cos there's so much information being fed back to the brain.
Changes noted while out of suit:
- bends his knee more easily when walking, running, stepping down. If asked to stand on one leg, the leg that is lifted up has its knee bent.
- he can walk up all the way up the stairs using alternate legs going up (hooray!)...that is if I'm on his left side & holding his left hand. If I'm on his right, he'll always use his right leg to go up ie. he has both feet on one step before moving up the next step. This is something I dont understand.
Changes regardless whether in or out of suit:
- speaking more. I think it's to do with better breathing resulting from the suit. Articulation still needs improving but that is not meant to be addressed by the suit therapy. For that, I'll have to do oral motor work with him.
- his drooling is lesser.
Saturday, August 1, 2009
NeuroSuit - end of parent training week
We completed the week of parent training sessions on the NeuroSuit. I found the 4 one-to-one sessions just about the right amount of time.
Day 1: One to One Training Session. The therapist started off by asking about his history; what he can & can't do; what are my objectives in suit therapy; got to know my son. She checked his muscles for tightness, range of motion etc. She also suited him up while we watched to learn how to do it ourselves. It takes a longer time to suit up a child when doing it for the very first time, so he was probably in the suit for only 10mins that day. The 2 hour session flew past.
Day 2: One to One Training Session. We observed the therapist in prepping him before putting on the suit. The preparation that she did was mainly "compression" and then it was our turn to suit up my son. I thought I memorised which bungee cords go where, from the first day, but I fumbled. It's a learning process. Then we observed his movements whilst he was in the suit and made small adjustments to the bungee cords. By the end of the 2 hour session, I was concerned why it didnt seem to make much difference to his gait...and it bugged me the rest of the day & night!
Day 3: One to One Training Session. Shared my concerns with the therapist. So this time round, we observed him moving around first without the suit. Then my helper & I suited him out. The therapist made some adjustments & got him to move around. It was great! He walked with such a beautiful gait! Running was good too, with slightly larger strides, instead of his usual trotting manner. The therapist & I were estatic!
Day 4: Group Parent Training from 10am - 4pm. Therapist demonstrated the exercises to do with our child before putting on the suit. E.g. stretching the achillies & gastroc soleus; hamstring stretch; hip stretch; hip flexors, quadrucepts stretch, trunk rotation etc. We were also shown exercises to do with our child when he's in the suit. For my son, since he had range of motion & is high functioning, I don't have to spend as much time preparing him for putting on the suit as the other parents of kids who aren't ambulatory. The therapist also got the parents to do some of the exercises on ourselves, especially the motor planning ones, in order for us to understand that it's not that easy - we had to think a bit to make sure we were doing it the right way! It was too many exercises for me to remember, but thankfully, they gave us a VCD demonstrating all the exercises! Phew.
That evening, we suited him up ourselves at home, to practice suiting him up & to note any other concerns as the next day was our last & the therapist would be flying off. I think he was too tired by then & was extremely grouchy. In the end, we took him to the park for him to run around in the suit, to get him happy. He loves running outdoors. But one of the neighbourhood park was closed off (guarded after a certain time at night) and the other neighbourhood park was not lighted up. He was so upset in the car (cried) when we couldn't get into his usual park! So drove to Tmn Tun park which I knew would have some areas lighted up. He was happy enough initially, moving around in the lighted area. But as we moved further in, it was dark & he wanted to go home. Asked why, he said "ghost"!
Day 5: (Final day) One to One Training Session. I received the Home Programme drawn up by the therapist, customised for my son, based on his abilities & weaknesses. We discussed & went through it.
I expressed my concerns on why on Thursday night, he didnt seem to run as beautifully as on Wednesday & whether it was because I didn't suit him up right. She explained that the suit is not a fixed brace. It's dynamic. We then observed him walking & running in the porch & on the sloped driveway. It was noted that when coming down a slope, the front of the foot tends to hit the ground first before the heel. Also, he could walk with a very near normal gait, if the walked slowly. But if he ran, he got into the habit of trotting. The gait was similar to a child who just learnt to walk. It was the way he learnt to stabilise himself when moving fast. It was easier for his body to stay in motion by running in that manner even though it required more energy. We need to break that habit & for him to re-learn the right way to run. It was suggested that we get him to walk slower, but also allow him to run freely as he's a kid afterall.
Also, treadmill training with a harness for safety, was suggested. In that training, he would be in the suit & we would manually move his legs to show him how to move properly while the treadmill moves very slowly, e.g. heel strikes first before toes; to have a wider stride; to lift up leg straight ahead (instead of swinging outwards). I googled that last night. It's variously known as "body weight supported treadmill training" or "partially supported treadmill training".
While he was in the suit, we also did some of the activities as suggested in the home programme. One toy I found useful during that session, which I borrowed back, was a game of catch the ball. This version has a small (15cm diameter) soft fabric ball and 2 discs which we hold in our palm. The front of the disc is covered with velcro (the hook part of the velcro). Up to now, I still havent been able to teach him to catch! So this will be a useful tool for that purpose.
That evening, I suited him up & brought him to the neighbourhood park. We did some of the activities in the Home Programme. He walked on uneven surface (grass), walked up slopes, walked sideways up & down & backwards down a slope (he was following a delivery truck that was probably lost), climbed a short ladder (just 2 rungs).
One thing I didnt expect was that after a tiring day of being in the suit, he didn't chew his food. Just kept it in his mouth. It happened on 3 different days. I think it was because he was very tired...he would have been in the suit for an hour. Exercising in the suit requires a lot more energy due to the resistance accorded from the bungee.
Day 1: One to One Training Session. The therapist started off by asking about his history; what he can & can't do; what are my objectives in suit therapy; got to know my son. She checked his muscles for tightness, range of motion etc. She also suited him up while we watched to learn how to do it ourselves. It takes a longer time to suit up a child when doing it for the very first time, so he was probably in the suit for only 10mins that day. The 2 hour session flew past.
Day 2: One to One Training Session. We observed the therapist in prepping him before putting on the suit. The preparation that she did was mainly "compression" and then it was our turn to suit up my son. I thought I memorised which bungee cords go where, from the first day, but I fumbled. It's a learning process. Then we observed his movements whilst he was in the suit and made small adjustments to the bungee cords. By the end of the 2 hour session, I was concerned why it didnt seem to make much difference to his gait...and it bugged me the rest of the day & night!
Day 3: One to One Training Session. Shared my concerns with the therapist. So this time round, we observed him moving around first without the suit. Then my helper & I suited him out. The therapist made some adjustments & got him to move around. It was great! He walked with such a beautiful gait! Running was good too, with slightly larger strides, instead of his usual trotting manner. The therapist & I were estatic!
Day 4: Group Parent Training from 10am - 4pm. Therapist demonstrated the exercises to do with our child before putting on the suit. E.g. stretching the achillies & gastroc soleus; hamstring stretch; hip stretch; hip flexors, quadrucepts stretch, trunk rotation etc. We were also shown exercises to do with our child when he's in the suit. For my son, since he had range of motion & is high functioning, I don't have to spend as much time preparing him for putting on the suit as the other parents of kids who aren't ambulatory. The therapist also got the parents to do some of the exercises on ourselves, especially the motor planning ones, in order for us to understand that it's not that easy - we had to think a bit to make sure we were doing it the right way! It was too many exercises for me to remember, but thankfully, they gave us a VCD demonstrating all the exercises! Phew.
That evening, we suited him up ourselves at home, to practice suiting him up & to note any other concerns as the next day was our last & the therapist would be flying off. I think he was too tired by then & was extremely grouchy. In the end, we took him to the park for him to run around in the suit, to get him happy. He loves running outdoors. But one of the neighbourhood park was closed off (guarded after a certain time at night) and the other neighbourhood park was not lighted up. He was so upset in the car (cried) when we couldn't get into his usual park! So drove to Tmn Tun park which I knew would have some areas lighted up. He was happy enough initially, moving around in the lighted area. But as we moved further in, it was dark & he wanted to go home. Asked why, he said "ghost"!
Day 5: (Final day) One to One Training Session. I received the Home Programme drawn up by the therapist, customised for my son, based on his abilities & weaknesses. We discussed & went through it.
I expressed my concerns on why on Thursday night, he didnt seem to run as beautifully as on Wednesday & whether it was because I didn't suit him up right. She explained that the suit is not a fixed brace. It's dynamic. We then observed him walking & running in the porch & on the sloped driveway. It was noted that when coming down a slope, the front of the foot tends to hit the ground first before the heel. Also, he could walk with a very near normal gait, if the walked slowly. But if he ran, he got into the habit of trotting. The gait was similar to a child who just learnt to walk. It was the way he learnt to stabilise himself when moving fast. It was easier for his body to stay in motion by running in that manner even though it required more energy. We need to break that habit & for him to re-learn the right way to run. It was suggested that we get him to walk slower, but also allow him to run freely as he's a kid afterall.
Also, treadmill training with a harness for safety, was suggested. In that training, he would be in the suit & we would manually move his legs to show him how to move properly while the treadmill moves very slowly, e.g. heel strikes first before toes; to have a wider stride; to lift up leg straight ahead (instead of swinging outwards). I googled that last night. It's variously known as "body weight supported treadmill training" or "partially supported treadmill training".
While he was in the suit, we also did some of the activities as suggested in the home programme. One toy I found useful during that session, which I borrowed back, was a game of catch the ball. This version has a small (15cm diameter) soft fabric ball and 2 discs which we hold in our palm. The front of the disc is covered with velcro (the hook part of the velcro). Up to now, I still havent been able to teach him to catch! So this will be a useful tool for that purpose.
That evening, I suited him up & brought him to the neighbourhood park. We did some of the activities in the Home Programme. He walked on uneven surface (grass), walked up slopes, walked sideways up & down & backwards down a slope (he was following a delivery truck that was probably lost), climbed a short ladder (just 2 rungs).
One thing I didnt expect was that after a tiring day of being in the suit, he didn't chew his food. Just kept it in his mouth. It happened on 3 different days. I think it was because he was very tired...he would have been in the suit for an hour. Exercising in the suit requires a lot more energy due to the resistance accorded from the bungee.
Monday, July 6, 2009
NeuroSuit
Last week, the deposit for the NeuroSuit was paid. The American therapist/owner is coming end of the month & I'm looking forward to starting the suit therapy.
Lots of hard work for sure & I've to be patient, but I these are what I hope to see in my son, with the suit therapy...
- significantly less drool
- better speech in terms of volume & clarity
- running gait a lot more normalised
- hip more stable
- arms straighter, less "bat wing" like
- able to do more gross motor skills, like stepping up higher steps unaided, pedalling, jumping, walking on balance beam unaided
- improvement in fine motor
There was an article in NST on NeuroSuit:
http://www.nst.com.my/Current_News/NST/Tuesday/Features/20090602093919/Article/index_html
Briefly, this is what I understand Neurosuit is meant to/has benefits of:
- correct the posture, through giving proprioceptive input back to the brain on what the correct posture is supposed to be. Cells & muscles have memory.
- intensify the benefits of any physio or therapies that he does while in the suit & so we'll see those benefits earlier.
- Since there are bungee like cords attached, it gives resistance & so strengthens muscles too.
This is the link to NeuroSuit's website, for more info:
http://www.neurosuit.com/
This is the link to some photos of a severe CP boy I know, who is sitting up unaided. He could only sit propped up in his wheelchair/stroller before the suit therapy!
http://www.facebook.com/album.php?aid=101893&id=607886440&l=ed984b5633
Lots of hard work for sure & I've to be patient, but I these are what I hope to see in my son, with the suit therapy...
- significantly less drool
- better speech in terms of volume & clarity
- running gait a lot more normalised
- hip more stable
- arms straighter, less "bat wing" like
- able to do more gross motor skills, like stepping up higher steps unaided, pedalling, jumping, walking on balance beam unaided
- improvement in fine motor
There was an article in NST on NeuroSuit:
http://www.nst.com.my/Current_News/NST/Tuesday/Features/20090602093919/Article/index_html
Briefly, this is what I understand Neurosuit is meant to/has benefits of:
- correct the posture, through giving proprioceptive input back to the brain on what the correct posture is supposed to be. Cells & muscles have memory.
- intensify the benefits of any physio or therapies that he does while in the suit & so we'll see those benefits earlier.
- Since there are bungee like cords attached, it gives resistance & so strengthens muscles too.
This is the link to NeuroSuit's website, for more info:
http://www.neurosuit.com/
This is the link to some photos of a severe CP boy I know, who is sitting up unaided. He could only sit propped up in his wheelchair/stroller before the suit therapy!
http://www.facebook.com/album.php?aid=101893&id=607886440&l=ed984b5633
Subscribe to:
Posts (Atom)