Monday, December 28, 2015

First Year of School - Done and Dusted!

At the beginning of the year, I was so nervous about sending Joshua to school.  It is so hard sending your child off with people you don't really know, but even more so when your child is unable to tell you anything that goes on there and you just have to 100% trust the people they are with to look after them.  

The end of the year is upon us now though, and Joshua has completed his first year of "Big School".  Transition as we call it here, but some people know it as Kindergarten or "Prep".    

The Australian Curriculum says that at this point Joshua should be able to do things like:

  • Recognise all upper and lower case letters, be able to name them and know most letter sounds. 
  • Be able to read and write high frequency and familiar words.  
  • Deliver Short Oral Presentations to Peers
  • Count forwards and backwards to at least 20
  • Use practical objects to model addition and sharing
  • Name Shapes
  • Use everyday language to describe time and days of the week.   
  • Use comparison to decide things like which object is heavier, longer etc.  
I could go on, but the point is, Joshua isn't doing any of those things.   Despite that, I know he has had a wonderful year.   

He has:

  • Made some friends, even if they aren't friends in the traditional sense.   He can say the names of all of the children in his class and his teachers, intelligible at least to me.   He started the year not really saying anyone's name.   He is still unable to say his own name, his sisters name...  and yet, he says the names of the children in his class.  
  • He counts well to 3, and come very close to mastering 4 and 5.     He has said them a few times.  
  • He can recognise and say the names of most basic colours.  
  • Learned to recognise and order the letters of his name with an example to model from.   (See the Video HERE!)  
  • His vocabulary has grown.  
  • He has participated in cooking, farming, sports, music, swimming as well as a whole host of fine motor, gross motor and communication related activities.   
  • He is beginning to recognise the sensations involved with urinating.   
Most importantly, he is a happy and confident little boy who loves going to school.  

Joshua on his last day of school for 2015

As always, Joshua continues to make progress at his own rate, as we are so proud of the progress he has made this year and the hard working boy that he is.

Using different communication strategies such as pictograms

Cutting with Scissors

Doing special exercises that my Physiotherapist planned for my Teachers to do with me at school

Being assisted to participate in different sports experiences like T-Ball!  

Learning to do different cooking skills, like try and cut a banana

Learning to respect and care for animals at the school farm

I couldn't be happier with his school and the wonderful array of experiences he is being offered, and can't wait to see what a fabulous year he has next year in GRADE ONE!!    

Saturday, November 14, 2015

Epilepsy is driving me crazy!

***WARNING:   This post contains an image of Joshua during a seizure.  If you do not wish to see this image, please avoid scrolling to the bottom of the post.   

Since Joshua was born, I've considered myself to be pretty chilled out as far as the possibilities go.  It is not uncommon for parents to have a lot of fear and anxiety about the possible unknown situations that can come up with a HIE diagnosis, and those feelings can be quite consuming.  I of course, have had my share of concerns and niggling worries, but I think I have been pretty good about not letting those things take over.  

Epilepsy is different though.   It makes me feel crazy.   I'll be the first to tell you that Joshua's epilepsy is mild compared to what others experience.   He has been diagnosed with Temporal Lobe Epilepsy.  I have witnessed two confirmed complex partial seizures, and his teachers suspect he has had some seizure activity at school.   He has started anti-epilepsy medication in order to try and prevent further seizures.   His seizures have been short (around 3 minutes long) and have stopped on their own.  Other children are not this lucky.   Some children have many different types of seizures, multiple times a day and cannot get them under control with medication.  Some children have seizures that are prolonged....  they do not stop on their own without medical assistance, and for many, hospitalisation after a bad seizure is a reality.  For many, the experience of epilepsy is much worse and much more scary than the little taste that we have had so far.

The horrible thing about it though, is that having these milder seizures can make you more susceptible to having  more serious seizures.   I honestly don't know if its just a matter of time before Joshua has a bad seizure, or if he will only ever have these milder seizures.   The unpredictable nature of seizures is what makes it so unnerving.   You feel as though you are constantly watching and constantly waiting for the next seizure, and constantly worrying if the next one could be worse than the last.   And I hate that.  We know that sleep has been a trigger for Joshua's seizures.  Either going to sleep, or waking up from sleep.  So it is at these times that I particularly watch Joshua.   I watch him fall asleep.   I watch every little twitch, every little move he makes.  Just in case he starts having a seizure.   And I hate that I have turned into that person.  I want to be the old me again...  the me that would have said "Oh He'll be right!" and not worried too much....  but instead I'm this me.......  Hyperaware.  

It's not just when he is sleepy that I'm watching him either.   Complex partial seizures are tricky buggers.   You could easily miss one if you weren't paying attention.   And the two I've seen have looked different to each other, so I don't even have that that to go by.  The first seizure Joshua had, he was basically slumped over with his eyes deviated off to one side....  but in the second one, he sat up and he was moving and his eyes were straight.   He experiences automatisms (repetitive movements) like making swallowing motions, picking at things with his fingers.  His consciousness is altered and he is unfocussed on his surroundings.
Seriously, do you know how many times a day Joshua's gets a vacant stare on his face and is not having a complex partial seizure?  Let me tell you, it is a LOT.  I'm constantly looking at this kid now and checking if he is having a seizure.   The constant seizure monitoring is kind of exhausting and I hate that I'm even doing it.

But epilepsy has real risks.   Joshua's seizures may be comparatively mild at the moment, but the greatest risk isn't necessarily the seizure itself, but rather the environment in which the seizure occurs.     If you are in a state of altered consciousness, you can't keep yourself safe in the same way that you could when fully conscious.   A seizure in a swimming pool or bath tub could be very dangerous.   A seizure when you are somewhere that you could fall from could cause serious injury.    During the second seizure that I saw Joshua have, he experienced 'ictal-emesis' or vomiting during the seizure.   When a person is having a seizure, they may not be able to protect their airway like they could when fully conscious, so aspirating or choking on one's vomit is a real concern.   Added to that, is Joshua's tendency to have seizures that are associated with sleep- which means the possibility of them occurring when he is in bed and unsupervised is real.  Believe me, no parent wants to think that their child could be alone in their bed choking on their own vomit during a seizure.   But that is the gift that epilepsy has given me.

My Dad has bought me a camera so that I can monitor Joshua when he is in his bedroom.  I am still waiting for it to arrive, so until then, he has been sleeping in my bedroom where I can watch him closely.  Some may think that is being dramatic.  Maybe the old me would have thought that too.  But the new me doesn't care.  I do miss the old me, the me that wasn't constantly watching for seizures (oh, trust me, I was still watching for them before, but not this voraciously!) And I miss the me that didn't feel like she needed a spy-cam just to let her kid sleep in his own room.    But this is what it is now, and once again, this journey has changed me.

Happy Joshua, swimming in the pool!

Joshua during a seizure, laying in his own vomit.

Tuesday, September 15, 2015

Sneaky Seizures

We have known since Joshua was a baby that his brain injury put him at high risk of having seizures. Joshua had his first seizure when he was about 5 hours old, and continued to have them for several days.   It took 3 different medications to get control of his seizures, but once they were controlled, after about 3 days, he was weaned from all seizure medications.
He came home from the hospital med free, but we knew there was a chance they could come back at any time.    The longer a child goes without having another seizure, the more the likelihood of having another one drops.    I once asked Joshua's paediatrician about it, and he said that if he did not have another seizure by the time he was 8 years old, there was a good chance he wouldn't have another one, but that there was always exceptions to the rule.
Of course, we had hoped that Joshua would remain seizure free, but have been alert to the fact that he may have them since he was a baby.  Over the years, I have seen many "odd" things from him, and wondered about seizure activity but never saw anything concerning enough to take it to his doctor.

That changed on Friday last week though.
I picked Joshua up from school, and took him to the shops in his stroller.   He fell asleep at the shop, which was unusual, because he doesn't often nap anymore and especially not in a busy public place like that.   He stayed asleep until I got him back to the car, and he woke up as I was getting him out of the stroller and putting him into his car seat.    As I went to shut the car door, I noticed his hands twitching out of the corner of my eye.  It struck me as being odd, but I shut the car door and put his stroller away in the back of the car.    I walked around to the drivers seat and climbed into the car.   When I looked back at Joshua, his head was slumped forward, his hands twitching and making movements with his lips.   I called his name a few times and he was unresponsive.
At this point, I pulled out my phone to video what was happening.    Getting a video of any suspicious events is the best thing to do, so that you have it to show a Doctor.
I began to record him, and demonstrate his lack of responsiveness, first by calling his name a few more times, then by touching his leg and hand and shaking him lightly to try and get a response, Finally I lifted his head up, at which point he focussed on me momentarily, but then his head and eyes drifted back off to the right.    Shortly after that, he began to come out of it and start looking around and looking at me when I was speaking.    I started offering him a chip, but it took a little while for him to figure out what I was saying it seemed.    Finally he took a chip from me.
I drove home, and he was drowsy in the car on the way home.  Once we got home, he asked to watch TV so I put it on for him, but he sat there looking dazed for a minute then laid down and went straight to sleep.  He slept for about an hour, and then when he woke up again, he was back to his normal self.  

I felt quite certain that he had had a seizure, and I thought to myself, he either had a seizure, or he is really really sick to act that way.   He did not show any signs of illness though.
Not wanting to over react, I decided to post the video on some online groups I am apart of, to draw on the collective wisdom of other parents who have been there.    The response to my video was overwhelmingly that it looked like Joshua had a seizure, and that what I had captured was exactly like their child's seizures.

I forwarded the video then, to Joshua's paediatrician and then anxiously waited for his reply.    When I got his reply, I was shocked.  He said that He couldn't be certain, but he did not feel that Joshua had had a seizure.  He did not think the event that I captured was typical of a generalised or partial seizure.    This stressed me out, because I knew what I had experienced with Joshua was not normal and knew in my gut that it had to be a seizure.   I did some reading and decided that it sounded exactly like a complex partial seizure and many of the parents who responded to my video online had also said it looked like their child's complex partial seizures.

I responded to him telling him that I had shared the video online before I sent it to him, and had many parents respond that it looked like their child's complex partial seizures, and that some of those parents had shared videos with me of their child's seizures and I felt that it definitely did look like a complex partial seizure.   I also insisted that my gut feeling was that Joshua had had a seizure.    I asked him what he thought it could have been if it wasn't a seizure because that was absolutely not normal behaviour for Joshua even just after waking from a nap, as he is typically a very active boy.  I also said that I felt the fact he was drowsy and had to sleep it off afterwards was very suggestive of a post ictal phase  (a period of recovery after a seizure).

I had already begun to plan out how I was going to seek a second opinion about the video I had taken.   It is difficult for us here, being a "remote area" and not having ready access to many specialists.    There is no Paediatric Neurologist here, but there is one that visits a few times a year.    I had planned to firstly ask the Visiting Rehabilitation Specialist this week if he knew much about seizures and see if he would look at the video, and if I had no luck there, I had intended on contacting the visiting neurologist myself, despite the fact we have never seen him before.
Thankfully though, when Joshua's Paediatrician replied to me, he had decided to forward the video on to the neurologist himself, saying that he was very good at interpreting videos.    By the time I had checked my email after work and saw the Paediatrician's reply, there was also a response from the Neurologist.   The Neurologist completed agreed that it looked like a complex partial seizure.
I literally jumped off the couch with joy after reading his reply and did a victory dance.   Not because I was happy that Joshua had a seizure, but because I was happy that my gut feeling had been validated.    I *knew* Joshua had had a seizure, and it was really stressful to feel like I wasn't being heard or agreed with.  I was ready to have to fight to find someone who would support what I knew in my heart to be true.   Thankfully I obviously managed to cast enough doubt in the mind of Joshua's paediatrician that he sought the second opinion himself.    I do like Joshua's Paediatrician, he is a great doctor, but Paediatrician's do not specialise in seizures or other neurological disorders, so they just don't have that specialised knowledge.   He has since asked if he could share the video of Joshua's seizure with other doctors, to assist in their training.  I have of course agreed, as it seems it would be very beneficial for all of them to see some different types of seizures in action.    For most people, when they think of a seizure, they think of a tonic clonic, which is the kind where a person falls to the ground and convulses dramatically.    The reality is though, there is many different kinds of seizures and they can be more subtle than you think.    I'm not going to share the video here, as it can be a bit distressing for some people to see, but I am happy to share it with anyone who wants to see it for educational purposes.  LOL

The neurologist was able to supply quite a bit of information from watching the video.   He believes it was a complex partial seizure, and that it likely occurred in the right temporal lobe.  
If Joshua continues to have seizures like this, he will need to be placed on an anti-epileptic medication to try and prevent them.

Statistics say that about 1 in 2 people with Cerebral Palsy will also have epilepsy.    They also say that once a person has a seizure, if they have underlying neurological risk factors such as Joshua does, there is about a 70% chance of them having another seizure within 6 months.
This means that unfortunately the stats are not really in our favour for Joshua to not have another seizure, but once again, we are in a period of wait and see.   We will wait and see if he has another seizure and if he does, then we will have to discuss putting him on medication to try and prevent him from having further seizures.

As far as seizures go, Joshua got quite lucky with the seizure he had.  They can be a lot worse.   And complex partial seizures can sometimes be a gateway for more serious seizures, so there is always the worry that if he does have another seizure, it could be worse than the one he experienced on Friday.

For now, we will just do what we always do.  Keep on keeping on, and keep on waiting to see.    

Sunday, March 8, 2015

The Process of Letting Go

When you first learn that your baby suffered a brain injury, it can be pretty devastating.   When we got the results of Joshua's MRI we were told that it was possible for some children to "beat the odds" and to go on and have no lasting problems after suffering a brain injury, but that they wouldn't expect that for Joshua.   When we questioned them about what sort of deficits we might see - Would he have a physical disability?  A Learning Disability?- they said it was impossible to know, and that we would just have to wait and see how he developed.

I told myself that Joshua was going to be fine.    Of course he would be one of those children who beat the odds and go on to have no problems.  Of course.  

Once I started googling Hypoxic Ischemic Encephalopathy, I found the blog of another parent and her child did end up with the full recovery.   Wow, how amazing it was to find that blog and see that it was indeed true that this could be possible for Joshua as well.

From the time he came home at 12 days old, to the time he was 6 weeks old, I lived in blissful ignorance that everything was going fine and Joshua was just like any other baby despite his traumatic start.  But after I took him to his 6 week check up with the GP, things slowly started to unravel.   She was concerned that his head hadn't grown very much and that his coronal sutures were very prominent.   Instantly, that made me worry.  But when we followed up with a Paediatrician the following week, she was reassuring, and I felt better again.   But this was the beginning of the obsessive measuring of Joshua's head circumference.   I cannot even describe how much I willed his head to grow, and how much I worried about what his head size might mean for him in the future.  The frustration I felt watching his head circumference slide down the percentile chart.

When Joshua was 12 weeks old, his Paediatrician diagnosed him with Hypertonia.  High Muscle tone.   I was annoyed.   There was nothing wrong with him.  He was making his muscles tight on purpose, resisting when people tried to move his limbs.   Right?  At this same appointment, Joshua's head circumference was on the 5th percentile, and I was again given hope that it may stay there and continue tracking on that curve.  It did not.  By the time he was 4 months old, his head circumference had dropped to below the 0%.  I still measured it often throughout his first year, wishing it would grow.

Joshua was referred to Physiotherapy, and he had 2 appointments with the hospital physio before being referred to Early Intervention.   They told me at the hospital that they had seen typical babies with muscle tone like that and they had outgrown it, but it would become clearer around 10 months or so.    Again- Hope.  Everything can still be ok even with this little hurdle.

Joshua was 5 months old when he had his intake appointment for Early intervention.  At that time, he was not considered to be developmentally delayed.  There is a fair range of normal when it comes to meeting developmental milestones and although most other babies his age were doing more than him he wasn't yet outside of the normal range for meeting the expected milestones.  They were concerned that his patterns of movement were not normal and that he was having motor difficulties due to his muscle tone, but he was not delayed.  He could hold his head up.  He could smile.  He could roll from his back to his tummy.  He could reach for toys.  He was doing ok.  There was still Hope that everything would be fine.

Once Joshua started Early Intervention, his development was monitored regularly using the Ages and Stages Questionnaire (ASQ).   And so started the fixation on his development.   All these things he was supposed to be doing.   All these things he wasn't doing.   Over the next few months the expectations of him increased, but Joshua's abilities didn't match the expectation.   I downloaded the ASQ, and I would study it to find out what he should be doing and what I should work on with him.   When he couldn't do things, it filled me with dread.  It wasn't supposed to be that way.  Joshua was supposed to make a full recovery.    By the time he was 8 months old, Joshua was delayed in both fine and gross motor skills.  He wasn't sitting up.  He wasn't crawling.  He wasn't rolling both ways.  He had an obvious preference for one side of his body.  (which was first noted when he was 12 weeks old and it hadn't gone away).   I had started reading about Cerebral Palsy, and I knew that the issues Joshua was facing were consistent with Cerebral Palsy.  The abnormal muscle tone.  The preference for one side of the body.  The motor delays.   The dream of a full recovery was slowly slipping away.

Although it is not really a good idea, it is hard not to compare your child.  And everyone has their "bench marks" by which they measure their child.  Looking at typical children, seeing what they can do, and then just wanting more than anything for your child to be able to do that too, because if your child can do that, then maybe, just maybe, a full recovery is possible after all.   I'm sure I had a number of these bench marks, but I was reminded of one recently when I came across a video on my computer of Joshua so I will use that as an example.    The little girl whose Mother's blog I found early on in our journey, who had made a full recovery, owned a soft fabric Ikea book identical to one that we had.   Her mother had posted a video of her at 8 months old, and she was able to point to the spider when asked "Where is the spider".   "Where is the lady bug"  and so on.   And so, for whatever reason, that became a bench mark for me.  If Joshua could do that, then he'd be just fine right?  So I'd show him the book.   I'd try and teach him what the spider was.    I'd try and ask him where the spider was and see if he knew.   He didn't know.   It was months and months and months before Joshua knew, and could identify things in books.   He didn't meet that bench mark for normal development.
It happens all the time...  Parent's clutching desperately at things like that, trying to compare their child to other children because the wait and see is really hard.  Not knowing what your child's future holds is really hard.  Will they walk?  Will they talk?  Maybe if I can find another child who was just like mine, then I will know what to expect from my child.
It doesn't work that way though.  Every child is so unique and individual it is simply impossible to map your child's path based on another child's.    And putting your child up against these impossible bench marks is only going to end badly if your child can't do it.  Why oh why, Why couldn't Joshua just find the spider in the book so we could live happily ever after???

Bit by bit, the dream begins to die.  And yet, I still chased it.  Desperately wanting to catch it.  That is what it is like, trying to catch hold of something really slippery, something that you really want but you just can't quite grab it.  It starts to roll away from you and you run after it.  At first, its only just out of reach and you think you could still grab it.  You just need to try a little bit harder and you will be able to reach it.   But it starts to get away from you.   It keeps on rolling and the distance between you grows.  You keep running after it, but the gap is only widening now.   At some point, you have to make the decision to stop running.   To accept that it has now gotten so far away from you, it just isn't going to be possible for you to catch it.    Sometimes you look around and see other people holding their dreams firmly and it makes you sad.  It makes you angry.   Why couldn't you have caught yours too?  Some people don't even realise that it is something to desire, something to cherish.  For them, it is just something they expected to have and didn't even know it was possible for it to suddenly roll away.  

At 12 months old, Joshua was delayed in all developmental areas.   At 13 months, he received his official Cerebral Palsy Diagnosis.   In the course of a year,   I'd gone from holding a new baby and believing and hoping he was going to be fine - he was going to develop typically and have no long term impact from his brain injury- to knowing that wasn't the case.  To accepting that my child had a life long disability and that there would be things that he would struggle with for his entire life.

Being able to focus on your child and their progress- instead of focusing on where your child "should" be- is like a weight has been lifted from your shoulders.   You are done running after something you can never catch,and instead you can just enjoy the walk and the beauty around you.
It is a process.   A journey that is unique to each parent of a child with a disability.   But each and every one of us are asked to slowly give up on the hopes and dreams that every parent has for their new baby, and to begin accepting the child we have for who they are - not who we thought they would be.    Letting go doesn't mean giving up.   It just means understanding that helping your child be the best they can be, doesn't mean striving for "typical".  


Saturday, February 21, 2015

Starting School

At the end of January, Joshua started school for the first time.  He is in 'Transition', which is the equivalent of Kindergarten in other states/countries.  

It was an emotional day to send my little man off to school for the first time, but he has been going for 4 weeks now, and I am really happy with how things are going.  

Here are some pictures of him in his school uniform, ready to go on his first day:

Joshua is attending a special needs school, and I definitely feel that this was the right decision.
He is in a class of 6 children, with two teachers.  Some of the children in the class are only attending part time with the view of gradually increasing their attendance, so often there is only 4 children there.  This means he is getting plenty of attention from his teachers.  

The activities are play based, and they take Joshua's interests into consideration when planning activities. Joshua loves anything transport related, and you can see here in the first week they made sure to have activities like trains out, to help Joshua settle in for the day.

Joshua started out really well, happily going to school without a problem, but after about the first week and a half began to have some settling issues, getting upset when dropped off and having some teary moments throughout the day which was mostly happening at meal times and meant he wasn't eating very much at school.   He has mostly come good again now, and is back to eating well and most days he doesn't cry when I drop him off, though it does still happen a little bit.   
When he was getting upset at meal times, the teachers said they were going to trial putting on some transport related movies for him to help settle and distract him so that he would eat.  I like that they are able to be flexible and use little things like that, that they know he likes, to try and make his day better.  

He has a communication diary which the teachers fill out every day with a little note about how his day has been, which is great to get that feedback since he is not able to talk enough to tell me about his day.     I can use it to write a note back to the teachers as well if needed.  

Some of the activities Joshua has been doing at school include art, music, Jolly Phonics, Stories, puzzles, duplo, water play and sensory activities like Kinetic Sand and play dough.   They have an interactive smart board on the wall in his classroom which they use for activities, and the school also has a heated pool, where he does swimming with his class once a week.  

They do a lot of things to support communication visually using pictographs and photos.  They display their days schedule of activities visually so that the students can see what is going to happen and the order it will happen in, and use pictures to help the students make choices.   Each day when Joshua arrives at school, he is shown a "choices" card, and is asked to point to which activity he would like to do.  At the moment, the activities have been sand, play dough or puzzles.  They encourage verbal communication as well, but Joshua isn't able to say any of those things verbally, so the pictures really help.   Here he is, looking at the choices card on the board:

His teachers have reported that Joshua really likes the pictographs and that he likes getting them to show the other students what is next.  

Here is another example of some of the pictures they use.....  in this one, they have a velcro dot on each of the photos and they are able to move the photo of the child to the picture to show them where they are going.   I moved Joshua to each location and took a photo.  Because it is cute and I wanted to!  Haha.   

As I work three days a week, Joshua has also been attending the Outside School Hours Care program on those three days, where he gets an afternoon snack and does other fun activities (including swimming, and time in the schools gym where they have lots of gross motor activities)  The co-ordinator has said that he is a very happy boy, and a pleasure to have there.  

It may just be a coincidence, But Joshua seems to have "grown up" a lot since he started school.   He is talking more and seems to be understanding more.   One of his teachers even said that he is "such a big school boy".   So for now, I feel really good about him going to school and feel like he is in a good place to help him learn and grow at his own pace with the right supports.