Monthly Archives: April 2013

OT, ST…Occupational therapy and Speech therapy start

ot signOT images

Despite all my efforts to find a “label” to apply to Harry’s delayed motor skills, I can’t seem to find one.    It is not a common issue; he is one in 20,000 with a congenital profound hearing loss, and even less has issues with balance.  It appears that it is a “bi-product”(and that is my own term) of his Deafness.

As you can imagine Readers, having followed this journey for the last year, I have discussed this need for a box or label with which to understand his issue with a number of Specialists- from our ENT, our Paediatrician to our Physiotherapist. But no-one seems to know exactly why Harry has these delays and he is struggling at the moment to stand on his own.

One consistent comment that has emerged through these discussions is that Harry is unable to work out where his body is in space. He requires a lot of sensory input to let his brain know that he is standing, the ground is beneath him and he can move up or sideways or go straight ahead in this space.

Our Physio appointments were only monthly and in between it was up to me to make things happen. It was only Physio that was trying to assist with his gross motor skills. It is like that with everything though- really the parents are the key to the child’s success. What you put in, they get out! I was trying as hard as I could but really everyone was waiting for it to just click into place for him.

OT clip art

So we have been bumbling along since January with Harry cruising around, and slowly getting more confident, but never really being able to go on his own as he couldn’t stand.  Every time he stopped he fell, either on his face or onto a vertical surface he could lean against.

He never starts from standing- he begins his walking experience by leaning against a person or a surface and then launches from there. And this is how he stops. There has to be something there to break his fall. He has not mastered the STOP by STANDING.

This is still where we are at the end of April. So between me, the Physio and the Paediatrician, we decided the only therapy we hadn’t really looked at for this issue was Occupational Therapy. I know nothing about this field. The Physio warned me I might find it “woolly” but quite frankly so was Physio. I was recommended a particular practice not far from home and set about to get Harry started. It took nearly 4 weeks for them to find a therapist that was experienced enough to tackle Harry’s issues. I now know why, as in between I randomly surfed the Web to see who else in Melbourne may have had experience with hearing issues and balance in Kids, phoned around and dragged us all off to see what they had to say. I spend endless nights drawling through reports on the Web about sensory issues and most notably Sensory Integration Disorder. It was the only thing that seemed to be close to what Harry was experiencing. It talked about the use of Occupational Therapy to assist with kids who couldn’t work out where their body was in space. It was not easy reading, as there were a lot of other social issues linked to this disorder, which Harry wasn’t displaying.

Did that mean they were to come- was there still more to unravel? I don’t think so. I think it was an exercise in learning not to self-diagnose.  It can be really soul destroying and ultimately damaging to all the work you have put in thus far.

The story ends well. I have  found a lovely lady who is an OT and has worked with kids with hearing impairments and she seems to know what she is talking about. She spent nearly 2 hours with us on the first visit to assess what may be the cause of Harry’s lack of equilibrium. In that 2 hours Harry had moments of walking without a wobble and it was enlightening for me. By the time I came to see the OT I was at rock bottom. I had convinced myself Harry was suffering from any number of disorders and was not making enough progress. I guess this is what comes of seeing so many Professionals- conflicting advice and opinions, when actually most of them, like us, don’t always know “Why” something is not clicking.

She then requested that we line our hallway , which Harry had stopped attempting to walk down, with rubber mats. The hallway was a means to get around most the house and he either crawled or pushed an object to get down it. When we tried to get him to walk down it alone he belted his head on the hard Jarrah floor so many times he just stopped trying. And who would blame him. This is because he seems to be missing the basic reflex of putting his hands out to save himself when falling. His head always hit the ground first. And with the delay in walking came enough age( or maturity) to know that it was a painful experience and not worth doing anymore.

password harry2011

I have some video with the mats down in our hallway and Harry’s sheer glee at being able to manoeuvre  himself solo for 12m. The first evening he walked up and back about 15 times just to make sure he wasn’t dreaming. The OT made some other requests which I have been doing and altogether I have seen a vast improvement in his steadiness and confidence over this week.

I will add a page into the Blog under Useful Links all about OT so if you think it might be something useful for you to read then it will be there.  We will be going weekly until our trip to the UK in June and so we will see what happens.

OT room

3 Comments

Filed under cochlear implants for kids, Hearing impairment, occupational therapy, sensory integration, speech therapy

First speech lesson at 23 months

password “harry2011”

This is Harry’s first speech lesson learning the prompt technique for the sound B. We have started speech earlier than usual ( normally it starts at 3 years) as  I have been the pushy mother that insisted it was a good idea. Never one to stop still I noticed with the Specialists that he is  mastering the sounds for the consonants   “M”, “N”, “G”, “K”/ “C”.

But there is no attempt on his part to try to copy any words that start with the letters “T”, “P”, “B”, “H”, “D”.

These sounds are made from the front of your mouth , whereas the sounds listed above that he can do, are sounds from the back. The normal progression in developing these sounds is when a child masters the expellation of air ( is that a word)  to allow them to shape these sounds that are made further toward the front of your mouth. By 12 months most children would use “plosive” sounds and nasal sounds (p,d,m). This continues through to 18 months with an establishment of all the vowel sounds.

So where is Harry with all this.

He has not mastered the plosive sounds  and has mastered about 1/3 of the vowels at this stage. So we are trying to work out whether he might have a motor skill issue that is stopping him from forming those plosive sounds which would generally come earlier than the hard back of the throat sounds of “G”& “K”. He is certainly hearing them, as his comprehension is on target with a child his age ( as opposed to his hearing age). But he just never tries to imitate any words beginning with these sounds.

As he has experienced some delays in his overall gross motor skills ( such as standing, walking , sitting)  the Specialists are guessing that there is a possibility of a link between this speech delay and the gross motor skill delay.  That link could simply be that he had an All Mighty infection last September and it is taking the body a while to completely recover and get back to where it was at that point. We also know in little ones, that the body focuses on one major thing at a time and if the brain is preoccupied with walking,  then the speech is going to come second.

The one clear thing in all of this muddy water is that he is developing. The speech is coming along. Maybe not exactly in the order that other CI kids have shown, but despite the lack of some sounds he is joining more than one word to make short 2-3 word sentences. Every time he practices them they get clearer and clearer as long – as they don’t include P’s or B’s , T’s D’s or H’s!

He says” Hear ya go” when he is waiting his turn for a musical instrument in a class setting and the instrument is being passed from kid to kid, before he comes to him. He also says it to us when he is passing us a toy.

He says “See  ya”  when someone is going , along with “Gye , Gye” in stead of Bye , Bye. And there are many more such phrases.

He says “Ank you” instead of “Ta” ( something I am immensely proud of !)

By 24 months a child would possibly have a vocab of 30 words or more. I don’t think Harry has quite that many as about 6 of his are animal sounds, but he is not that far off. His hearing age is documented as not quite 12 months  now, as we have to take into consideration the 6-8 weeks without sound during and post-op of the period of Infection last year.

So, all in all, he is doing  so well.

CONGRATULATIONS , HARRY. meadal of awesome

 

Leave a comment

April 27, 2013 · 11:23 pm

Hachimaki

Hachimaki

Hachimaki is the Japanese headband worn as a symbol of perseverance and courage.

Still looking for inspiration on a name

3 Comments

Filed under Uncategorized

Bionic Band

20130410-211502.jpg

It’s all in the name…
What should I call the headbands?
Should I reference ears, or hearing or fashion?
For sure, “Bionic” will be Trademarked by the Institute, so the whole family sat around the table tonight reeling off various versions of Harry’s Ears and trying to come up with a cool name for the headband.
Maybe we don’t need a name , as
my all time goal is to get Cochlear Ltd to include the headband in the suitcase of accessories
you get when your child receives their implant(s).

Wouldn’t that be awesome as it is all very well being supplied pens with screwdrivers on one end and a million processor covers , but what about an accessory that keeps them on a head that is only 50 cms in circumference ?

So, Folks, I really hope some of you guys all over the world tuning in to my tales will also buy up big on the Bionic Headband. My next step will be to set up shop(online of course ).

And the big news , based on your feedback, i have pleaded to get the price down to $18 AUD . I will be making hot pink for girls and electric blue for boys.

So stay tuned for more details

20130410-212924.jpg

18 Comments

Filed under Hearing impairment, Uncategorized

Sewing is child’s play…

Sewing is child's play...

Folks, I am ready to sell Harry’s headbands online.
It has not been an easy task to find someone to make them commercially so other kids can benefit from this great design .
Before I press the button, please let me know if you would pay $25 for one ( plus Postage for delivery) .
I wish we could give them to you at no cost but this is the best I can do to start .

Please send your feedback as I plan to start production this month

3 Comments

April 9, 2013 · 10:43 pm

More than 12 months hearing

20130403-071053.jpg

Harry has heard sound for more than one year now. We passed his first hearing birthday back on March 15th, and it is incredible to look back at what has been achieved in that time.

Harry’s progress is steady but slower than we thought it would be.

I remember vividly, Rita ( from the Brighton Early Intervention Service) saying to us at the very start of the year before his operation that he would be a talker . The evidence for this lay in his siblings communication skills. And indeed it is true Tess and especially Alice could talk the hind legs off a horse. Harry is surrounded by the sound of chatter and imagination everyday. He is also bombarded with squeals and screams as we navigate a house of female hormones and all that goes with bringing up two independent and strong-minded spirits.

He was not left behind when the strong will was handed out. He is such a determined little soul and even though we can see clearly now he is different from his peers he strolls through his challenges un-phased.
I am still very preoccupied with Harry’s balance. Walking is still a stones throw away but his ability to stand unaided and balance in an unsupported standing position is a struggle. None of the Specialists have any answers – they all seem to think one day it will just all click into place and we have to be patient. I am thankful Harry has a personality that is laid back enough to not get frustrated that he can’t get around on his own- he is a problem solver and uses tactics he has deciphered to be useful in maneuvering himself around on his own to get where and do what he fancies. Pushing a chair, a trolley, grabbing an adults hand or just reverting back to crawling seems to be enough to get him from A to B.

So on this journey I am once again reminded that my desire to be a perfectionist has been challenged. Things don’t fit into boxes to be ticked all the time . If Harry is not phased by his lack of independent vertical mobility then I need to focus on the positive achievements he is making with speech , as there are lots to celebrate there.

The clarity of Harry’s speech improves everyday. He has the same handful of words that relate to his everyday life and he uses them consistently in context. “Ugger” has now become so very close to “water “anyone can decipher his request.
At a speech assessment last week I was told he should at this stage be learning at least a new word or a few each week. I am not sure that it is happening at that speed so we are going to start speech therapy from the start of next Term at
Tarayle(www.taralye.vic.edu.au)
The thing is he is reading a lot- Harry just loves books and the amount of words we share together whilst reading is enormous. So given this, his vocabulary should be bigger. For some reason the way his implants are hardwired into his cortex and interpreted by his brain is not resulting in instant recognition for him. The recognition however comes after hundreds of times exposing him to the same word in the same or varying context.

No two kids with implants are the same but they all get to the same destination eventually and usually before they start school. PATIENCE is always rewarded

20130403-071716.jpg

 

2 Comments

Filed under listening skills