Category Archives: Bilateralism
We have recently moved to a new Occupational Therapist centre as his previous OT was marvellous but just didn’t have the space to accommodate what Harry needed at 3.
Today his therapist spent time with him working on his back extenders to build his core. Muscle tone is still a big concern with Harry, sitting still for long periods of time is not possible without him slumping and we recently purchased a great cushion which assists him to hold is core muscles in and sit upright without slouching. It also has a series of nodules which serve to stimulate the preproreceptors and let him have extra feedback through his sitting muscles.
In contrast to the senses of vision and audition which can easily be understood by simply shutting our eyes or plugging our ears, the significance of vestibular function in our daily lives is more difficult to appreciate. When the system is functioning normally, we are usually unaware of a distinct sensation arising from vestibular activity since it is integrated with visual, proprioceptive and other sensory information such that combined experience leads to a sense of motion.
Check out the videos below showing what Harry does in his OT sessions to assist with his vestibular systems ability to compensate for its deficiency and all this is going on in the background whilst his language has developed over the last 2 years.
Password protected videos use the password:harry2011
Testing Harry’s knowledge of colours and ability to listen to instructions whilst working the vestibular system and core.
If we were meant to pop out of bed , we would all sleep in toasters- A lesson in sleep for CI toddlers
In the last few months so much has taken place that I have wanted to write to you about but I haven’t found the time.
Back in the day, Harry had a decent afternoon nap which meant if I could possibly stop myself from loading the washing machine or sorting the clean laundry I could sit at my computer and churn out a Blog entry. But alas, no more. He actually hasn’t had an afternoon sleep really since we went to London this time last year. He still sleeps at Kinder but I have had to restrict it to one sleep cycle of 45 mins. only as otherwise it massively impacts on when he goes to bed.
This leads me to the first part of my story- SLEEP
At the beginning of the school year we decided Harry was too large for his cot. The base was bowing under his massive 16 kg weight and when he didn’t want to go to sleep he was now able to scale the bars and fling himself out, usually requiring a Chiropractic adjustment on landing. So a small purchase of an Ikea toddler bed was thought to be the best transition to freedom. At least he could manage to safely get himself in and out of it without my fear of falls everyday. His delayed vestibular development effects how Harry understands where his body sits in space, so getting him to maneuver himself up and down from a normal single bed seemed to me to be adding an extra layer of processing he may be better off without at this point.
In hindsight, this new freedom was probably the cause of the fast path to no sleep. The first 4 weeks in the bed went perfectly and I was congratulating myself on how he was able to adjust to change. As an aside, the reason for this thought was that often when various Doctors or Specialists are assessing you, they could start to direct their assessments to a place that is in “ The Spectrum”. Seeing whether a deaf child is one that also has social issues or behavioral issues, is a common discussion and one for another Blog post… Remind me about it later.
It started to go pear-shaped when daylight savings was approaching and Harry realized that in the time he was in bed and before he fell asleep it became progressively darker outside. He would lie staring at the window and wouldn’t let me put the blinds down. Then he wanted the main light on to read with, which as you can imagine sent me crazy as there is no way you can fall asleep with the ceiling lights on. What we thought was a little fear of it getting dark escalated into him refusing to go to sleep – AT ALL.
The compliant boy, who used to read until he dropped off, now clambered out of the bed and started pulling everything in the room out of its position and onto the floor to play with. He was over stimulating himself and using whatever was in the room to aid him. The only logical step was to remove these things from his room, which I did one by one until there was only his bed and the change table left. He also used to bang his feet against the wall, which I guessed was to feel the vibration and allow him to work out where he was. Then he started to climb into the shelf of the change table with a doona and pillow and try and sleep there, as it was the only thing left besides the bed… Obviously sending me a message he would sleep anywhere except the bed.
I was really unsure what was going on at this point and was it was now taking us until 11pm to get him to settle. The level of noise he was generating so late at night was impossible to tone down as he was used to having no CI’s on at night. Often the only way to get him to sleep was to put him in the car and drive until he fell asleep to the motion. I also threw in some of the Super Nanny tactics I had seen on TV which were meant to ensure he stayed-put on the bed. The reality was a major workout for me, lifting a 17kilo boy back onto the bed hundreds of times a night. If you picture the scenario: an overtired, worked up, small child who was unable to communicate to us his needs and we were unable to communicate verbally what he was required to do. My challenge in communicating with a 2.5 year old who refused to sign, refused to look you in the eyes and was without his connection to sound resulted in hours of getting physical.
Through his stubbornness to succumb to sleep, he progressively became more and more overtired and with that he became over – sensitive or technically, hyper- defensive to touch. This meant I couldn’t hug him or stroke him or use any sensitive physical means to make him feel secure in the environment he was becoming stressed in. He started to display many of the signs shown by a child with Sensory Processing Disorder (http://www.sensory-processing-disorder.com/tactile-defensiveness.html) and in my own sleep deprivation I started Googling…. Never a good thing.
His behavior in the day was a direct result of the stress of getting to sleep at night. Dan and I had not eaten a hot dinner together, the girls hadn’t been able to get to sleep in their room next to his before 10 pm due to his noise and we couldn’t have anything resembling a social life for more than 6 weeks- it was time to call in the BIG GUNS.
In floods of tears at the GP’s clinic we were given Melatonin and a sedative 6 times stronger than Phenergan to put him to sleep. The idea was to allow him to fall asleep aided in his bed in his room rather than the car and eventually he would forget the scary associations he had developed with his room and night time and only remember the current calming sedative induced sleep from the antihistamines.
The melatonin was to try and get his body clock back on track and bring his circadian rhythms in line so he was going to sleep when he was tired. (http://www.sleephealthfoundation.org.au/files/pdfs/Melatonin-and-Children.pdf) There is not much research in to the long-term effects of using melatonin on kids but short term there is no harm. It seems Pediatricians have used it for kids that have autism, ADHD and other special needs for the last 20 years. I can also tell you that in this time when I did not know what to do, I reached out to the Facebook page I belong to “Parents of CI kids”. The most common response to my call out for help was to try melatonin. It transpired that I was not alone in this sleep-deprived world of a nearly 3-year-old deaf child with CI’s. It appeared to be a common occurrence at this age, there were other parents around the world who had also experienced similar sleep disruptions from their CI kids. I love this site and if you are a parent of a CI kid and don’t belong I highly urge you to join up.
It took a good further 2 months to get him back on track. I also sought the advice of a “Sleep Consultant” on the referral from our Pediatrician. It was at the Epworth-Monash Sleep Clinic in Melbourne (Dr. Margo Davey) http:/www.epworthsleepcentre.com.au/index.php/doctor-margot-davey , a Doctor with enough experience to see through the smoke and mirrors of the situation and who gave me the biggest telling off I had in many years. Interestingly she told me that I needed to forget Harry’s deafness and focus in on his behavior, which was that of a standard 2 1/2 year old boy ruling the roost. Yes, he may have some issues relating to not hearing at night but essentially when she striped back our routine, she felt he was running the schedule, not us. I can laugh about it now, as that short consultation allowed me to remember that I had been a mum twice before and probably not perfected sleep routines either time. But the rules of engagement I applied to very articulate 3-year-old girls to get them through this period just didn’t make the grade with Harry. He needed routine and no deviation and me to be firmly in the driving seat.
We are still not back to where we were at the beginning of the year but we are in a place we can manage and it works for us all. I am in the room till he falls asleep and we are still using the melatonin but in such small doses it is negligible . He still has the blue light on all night and some nights will ask to fall asleep with the bedside light too. He is sleeping all through the night for 11 to 12 hours so I actually don’t think I can ask more than that of him at this age.. He will now also let a babysitter or even his big sister put him to bed and read to him until he can no longer fight the heavy eyelids.
There is no doubt that on this journey you can get so embroiled in the struggle for normality that when something fairly normal takes place you are unable to see it for what it is. I have said before that we are on a rollercoaster with Harry and it goes at quite a speed. We don’t have the luxury of time to reflect and ponder the best move in our chess game; we have to be instinctive and practical. This episode really taught me that it is easy to lose my natural instinct amongst the labels and the instructions for Harry. But it is still there if I dig deep enough and get enough sleep!
Next BLOG I will discuss Clinical Assessments
It has been 3 months since I last wrote on the Blog, which is remiss of me.
To make me feel better I will share with you that I have noticed a trend within the Blogs of Parents of Children with Cochlear Implants. And that trend is that once things start to click into place with their child’s speech the outlet of the Blog takes a back seat.
Is it that we no longer need to voice our frustrations and challenges? Maybe, but they certainly don’t completely disappear with time it is just that we have more tools in our tool box to cope with them , I think .
After a period as a family of a CI kid we enter a world of relative calm and dare I say it “normality” which doesn’t feed the necessity to pour out our heart and soul to the world. Of course I am going to continue to write this Blog as you never know what is around the corner and I am still digging up interesting experiences as we plod along .
We had an awesome summer. I think the best holiday we have had as a family of five and that would make sense as it was wasn’t the one when we were waiting for Harry to be implanted on our return and it wasn’t the one following his hideous infection last year. It was just normal really- how I remembered Summer holidays when we just had the 2 girls. Dan and I laughed a few times at the long list of “requirements” we had jotted up on the trip this year that will become our bible for booking a family holiday. NO stairs, gates that lock to the street. Door handles high enough for him not to be able to reach and open, shade by the pool for when he can’t go in. And most importantly lots of room to spread out toy cars and trains. We also had grass and playgrounds close by so Harry had options for playing that also met his Occupational Therapy needs. And for Dan there was always a big, well equipped kitchen so he was happy too.
Having Harry walking was a huge advantage on the trip. It meant he was able to be independent inside the houses we stayed in and that meant I could relax ( to an extent) . But as with most 2.5 yr old boys this independence extended to constantly needing to be on the move. When we weren’t enjoying the luxury of the house we had swapped or rented , we were running after him in a High Street nearby where we were attempting to have lunch or dinner or just getting an ice-cream. That boy does not stop moving, it is almost like he is trying to make up for the delay he had in getting onto his feet properly. Thank goodness for those huge stretches of wet sand on the Northern NSW beaches. Endless walking and navigating rock pools was the perfect environment to test Harry’s balance.
We had nearly 4 weeks off together and when we returned and everyone was back in full swing and routine , I took a moment to reflect on how far Harry had come in the last 12 months.
We are nearing the 2nd anniversary of his implant switch on and I have a son who not only hears what we say but is also observant enough to recognise and name many sounds in the environment .
I have stopped counting his words and have replaced that with a record of the number of words in each “sentence”. The constant and detailed review might be obsessive but as parents we are the best advocates for our kids and the more you know the more you can help them.