Tag Archive | school

Our CF journey so far…

On the 16th May, it will be seven years since our family was completed. On the 12th June, it will be seven years since our family member’s lives were irreversibly changed by two little letters.

Cam funny

Cam- our little joker!

The last seven years has had its up’s and down’s. Cameron is a vivacious little boy who lives his life to the fullest. He doesn’t walk, he runs through life (literally and figuratively!) If there is a joke to be found…Cam will find it! His diagnosis has not dragged¬†him down in the slightest.

But that doesn’t mean there haven’t been hard times.

In the last seven years, Cam has been admitted in to hospital four times. There was one when he was diagnosed, sick with double pneumonia and underweight due to malabsorption.

The second time was when he was two years old. A bronchoscopy at annual review that year showed he was growing the dreaded super-bug Pseudomonas in his lungs, which is an instant minimum two-week admission into hospital for intravenous antibiotics.

Cam sick

Hospital is never fun ūüė¶

The third time was unrelated to his cystic fibrosis. He had severe tonsillitis and his throat closed over. It was a scary 24 hours! We were more worried about that than anything he had gone through with his CF by that point.

The fourth time, he was five years old, and another routine bronchoscopy showed Pseudomonas again, which resulted in a gruelling two weeks in hospital and another week of treatment at home. We were all exhausted by the end, and it was a rather traumatic experience for Cam which resulted in a slight fear of needles.

Over the years, he has also had a staph infection twice. The first time, we discovered he was allergic to one of the antibiotics they used to treat it.

Cam nebuliser

He hates nebulizer treatments

He currently has about 30-35 tablets a day to keep him healthy. This includes Creon tablets (which help him digest his food), salt tablets (as salt loss is massive with CF-ers), a multivitamin, Vitamin D tablets (to ward off osteoporosis, which is high risk in CF-ers) and antibiotics to prevent infections. This doesn’t include when he has a moist cough, where we treat him with two weeks of nebulizer antibiotics at home. If there is no improvement after that time, it requires a hospital admission for IV drugs.

Cam Pep

Cam using his PEP mask. He will try anything to get out of doing it

He has progressed from percussion physiotherapy to resistance breathing techniques using a PEP mask and “huffing” through a wide pipe to help move any mucous around in his lungs. He is now in charge of his own physiotherapy (of course, under close watch by us, as he is well-known for trying to worm his way out of it!)

His high fat, high salt diet is now easily maintained. It was a massive learning curve when he started solids, but now we just add the “goodies” to meals once separated from the rest of the family’s meal, or add a few extra high-calorie snacks to his lunch box, and extra helpings whenever he requests. Cam is a little on the shorter side, but in terms or weight and build…he is actually a little Buddha for a CF kid , who are generally notoriously lanky/skinny.

Cam eating

This kid LOVES his food!

He is pretty good about dealing with his condition. About two years ago, he had a little breakdown. He suddenly didn’t want to do his physio. He didn’t want to have his medication. He didn’t want needles. He didn’t want to see doctors. He didn’t want to have cystic fibrosis anymore. There was a bit of focus on him at school as he was in pre-primary, and the other kids were taking notice that he was a bit different. In the past, his outlook was “I am different, and that makes me AWESOME!”…suddenly, it was “I’m different, and I don’t know if I like it anymore…”

We decided to just pull back a bit and allow him to work through it on his own. We didn’t push him in to anything he didn’t want to do (with¬†the exception of physio and medication…sorry buddy…no escaping that!) We let him talk things out. I spoke to his teacher, and they tried to make things as discreet as possible at school (ie. having medication away from the rest of class)

I have to admit, I was a bit surprised at how young he was when his “breakdown” came. I am sure that many more are expected over the coming years, but I’m sure we can work through it.

We don’t stop Cam from doing anything. We want him to experience everything he can. He recently started sword fighting classes, which he loves considering he loves pirates and ninjas! He has a great circle of friends who understand his condition, but don’t see him as his condition. He plays pranks on his family, much to our chagrin sometimes. He also gives the best cuddles (but not in front of anyone….of course!)

Silly Cam

Nothing is going to stop this kid!

Life certainly isn’t easy when you live with cystic fibrosis, but it certainly isn’t as bad as what I envisioned it would be when he was first diagnosed. I’m not making light of the condition….CF sucks…it truly, truly sucks. But we have been lucky with our experience so far….a lot of other families haven’t.

May is CF Awareness Month. 65 Roses Day is on the 27th May this year. All I ask is that you take a moment to familiarize yourself with the condition. I’m not going to push for donations (though it would be awesome if you could) but the whole focus is awareness.

I just hope that sharing our experiences, it sheds a little light.

 

Bella ūüôā

 

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That day has arrived!

I have been dreaming about it for four and a half years!

Last week, my youngest son started pre-primary schooling!! All four kids are now in full-time school!!! In the same location!! At the same time (between 8:30am and 3:10pm!)
The idea of five days a week without having to hear “But Mu-u-u-m!!”, or “So-and-so took my toys” or “I’m hungry!” has felt like a distant dream…until last Monday.

IMG_0013

First day of school, 2014

While a massive part of me wanted to kick my heel together and skip out the school gates, there was a small bit of worry lurking in the depths of my stomach as well.

Cameron was at daycare for around two years. The staff all had training from the CF Association for his cystic fibrosis,. They worked very closely with me for his meals in regards to his special diet. They worked breathing exercises  into their daily programs so Cam could do his physio, without being obvious to other kids. I also wrote out medical forms every day to specify how many tablets he had to have, and when.

This was the cause of my worry about starting school.

(NOT Cam's lunchbox!) This is a representation of  a CF lunchbox. Seperated into meals. The round, blue containers contain the medication.

(NOT Cam’s lunchbox!)
This is a representation of a CF lunchbox. Separated into meals. The round, blue containers contain the medication.

The CF Association came to town a few days before school started and did a presentation to the school staff. I was present to make the information more personalised to Cameron’s needs. The staff seem to be switched on and are welcome to approach me with any questions (which they already have- just to clarify they are doing it correctly) Cameron takes his medication in his lunch box, and administers himself. I leave a note in different sections of his lunch box to let him (and the staff) know how many tablets to take for morning tea, lunch…etc..

Let me clarify right here….I am a control freak! This loss of control over knowing how many tablets he is taking…especially IF he is actually taking them just about has me starting the bad habit of nail-biting.

I trust Cam will take them. I trust that he will not start eating his meals without having his tablets. But there is still this niggling worry that something will go wrong somewhere.
At daycare, it was all written out for the staff. They stood over him and watched him have his tablets (he still administered himself, I believe). All staff in the building had CF training, whether they worked in his room or elsewhere….everyone KNEW Cam’s needs and their importance.
My biggest concern is that the teachers, aides (etc.)….but especially relief teachers…will miss the significance. The importance.

One part of my brain is trying to soothe me, saying “It will be ok. Other CF kids go to school!”….but another part of my brain is replying “But this is MY child!!! If they screw up…even just a little…it could mean pain!”

Cameron is absolutely LOVING school. In terms of medication at school….so far, so good!

He missed out on the last three days from the first week of school due to a medical check-up in Perth (another story in itself) but he is keen to return next week.

He is so eager to be a “big boy”.¬†I’m eager to have “quiet child-free time”!! This is what is slowly calming my worries!

Everyone says “You wont know what to do with yourself now that they are all at school.”

Trust me…I know EXACTLY what I am going to be doing! I have a massive stack of books to read. I have a mound of paperwork I have been pushing aside due to lack of energy and concentration. I have friends who I have been neglecting. I have a giant pile of coffee pods to drink. I have many tv shows recorded.

I will be fine!

How was your first day of school?
Bella ūüôā

Angels in disguise

All parents, especially mothers, have a few fears when their children start school. Will they be able to make new friends? Will they be able to handle the school work? Will they cope?
All these fears are heightened when you have a child with special needs.

It has been four years since my eldest son, Aaron, first walked through the school room doors.

My eldest son, Aaron, who is now almost 8y/o, This photo was taken at Christmas, 2012

My eldest son, Aaron, who is now almost 8y/o, This photo was taken at Christmas, 2012

Actually, it was the second time. The previous year, we had tried to enroll him in kindergarten at private school. But after one half day, they pointed out all his development issues (I was trying to bury my head in the sand at the time, hoping he would just “catch up” once he was around kids his own age) He spent the entire morning in a violent meltdown, which was extreme and common at that time. When I went to pick him up, the teacher told me, quite abruptly, that we needed to see a speech therapist, an occupational therapist and we needed to see our doctor to get a referral to see a pediatrician, and that they could no longer take him in until he was fully toilet trained, which beforehand, they told me wouldn’t be a problem. (We later pulled him from that school completely)
I drove home that day crying my eyes out. That was when I realised how big of an issue we had on our hands. That is when our battles began (but that is another long story)

I was advised that public schooling was the best option for us, as they get more funding for children with special needs than private schools do.

When he started pre-primary, at a new school, we were armed with the Global Development Delay diagnosis, which made him eligible for an aide until he turned seven years old. There was only enough funding for an aide for one full day, and three half days. His aide, to say the least, was an ANGEL who was good at hiding her wings! She basically toilet trained him (which just was NOT happening at home), set up all the tools to help him settle in and learn, and dealt with his frequent and extreme meltdowns with a level head. She was amazing!

But she is not the inspiration behind this post (though she does deserve a gushing one of her own!) 

No, this post is dedicated to the other students that were in his class that year. They accepted Aaron for who he was, and the dramas that surrounded him, with open arms. They helped to guide him to make correct decisions in social aspects. They would whisper hints to help him with his school work (which was heavily simplified for him due to his learning ability) They would encourage him to join in their lunch-time games, despite the fact he rarely did.
The best thing they did, was that they accepted, without judgement and ridicule.

I know a lot of this happened because the teachers would tell me about it. Unfortunately, because I had three younger children still at home,¬†was working hard to get our cleaning business off the ground (which, really, is unimportant to this story), plus still living in a “bubble world” in terms of my youngest son’s cystic fibrosis diagnosis…I was unable to volunteer as a parent helper in the classroom to witness this more personally.

But there came a day when I did witness this beautiful wonder of these amazingly accepting and helpful children.

Despite not being able to help out in the class room, I still made it to every “Parent Day” and carnival. This particular day, the children were doing an Obstacle-a-thon, which was three laps around an obstacle course in the pre-primary area. The children fundraised through their laps, to raise money for the pre-primary area funds.

Aaron during his Obstacle-a-thon in 2010

Aaron during his Obstacle-a-thon in 2010

I brought along my daughter, Eva (who was four years old at the time, and we were beginning to realise at that time she also had Global Development Delay) and my youngest son, Cameron, who slept in the pram almost the entire time…(Ethan, my middle son was sick at home with my husband that day.)

My daughter joined in on the fun with the other students. After the laps were completed, there was a picnic lunch for parents and students. As we sat, my children had a packed lunchbox ready to devour.
As I dealt with Cameron, who had awoken and wanted a bottle, I looked over and saw that Eva was struggling to open her yoghurt and other sealed goodies. She was becoming a little upset (a reminder, this was around the age that her food compulsion was at its highest peak.) I was just about to put Cameron down and move over to help her, when one of the boys in Aaron’s class, leant over and opened all the food for her. When one of the other student asked something about (the exact words asked escape me now), this particular child replied “It’s ok! It’s Aaron’s sister, and she is just like Aaron!”

“Oh….ok then!” (continues to eat his own lunch)

There were no stares at her behaviour. No sniggers. No rude comments.

Just kind, helpful natures, and an awareness beyond their years.

These boys…no…ALL the children in this class were accepting and willing to bend over backwards to help a fellow student/child to develop and grow in their own way.

I sat back in shock and amazement. I drove home in tears again…happy ones this time…at how lucky my son was to be around such awesome kids. My fears of my special needs son not ever being able to make friends flew out the window! Later on in life, I hope realises how special these friends are/were.

I wish I could say that the rest of his schooling years have been as smooth and accepting as this. Aaron has had his fair share of bullying since starting primary school (and things went downhill, fast, once the funding ran out for his aid…however, that’s another story for another day) However, he has always had a few of the students from his pre-primary year in his classrooms. These students have continued to protect, encourage and nourish Aaron over the last two and a bit years.

To these students, you will probably never know how much love I have for you for being so amazing to my son. You have helped model him into who he is today, whether he will ever realise it or not, and I don’t think you will ever realise what you did for him.

From the bottom of my heart, THANK YOU!! You are truly amazing kids. You will make your parents proud and I am positive you will grow into fine young men and women. Keep up the amazing work!

Bella ūüôā

Good News!

A couple of weeks ago, my daughter (aged just over 5 years old) had a pediatric appointment.

It was a follow-up appointment from thirteen months ago when she was diagnosed with Global Development Delay. From that diagnosis, my daughter had a year of speech therapy appointments, occupational therapy appointments (like her older brother) and attended a kindergarten that had a specialized Early Intervention Program. It has been a very intensive year for her.

Anyway, back to the appointment.

The pediatrician conducted a Griffiths test on her to see how she had come along over the past year.

After going over the scores, the pediatrician concluded that while my daughter is low-average in development, she is no longer classed as having Global Development Delay! YAY!

She has now been discharged from the pediatrician, but is still on the therapists books, just in case she still needs assistance as she makes the transition to pre-primary. I am a little concerned over the fact that I don’t¬†know if she will still be able to attend the Early Intervention Program this year, as she could definitely¬†benefit from another year, but without the “label” of GDD, is she still eligible to attend? (I will keep you updated on that, I should find out next week before the school year starts)

This is weight off my shoulders, as it means one less child to attend therapy appointments for. We still have the respiratory clinics for her, and we are about to embark on the next trip of seeing psychologists for her eating habits (whole other subject….in due course!)

Hopefully we will still see her come along in leaps and bounds. Wish her luck for her new year at school!

Bella ūüôā

Happy Birthday to the Queen of England…from my son

Last Friday, Western Australia celebrated the Queen of England’s birthday, despite the fact that her actual birthday is sometime in February…I think. To honor Her Majesty, the state is given a public holiday (the rest of Australia celebrate it earlier in the year)

This year, Her Majesty happened to be in Perth for the Commonwealth Heads of Government Meeting (CHOGM) at the time the state was in celebration.

CHOGM 2011

My eldest son, who is six years-old and has Global¬†Development Delay, was obviously told by his school teacher last Thursday that it was the Queen’s birthday the next day, and that was why they didn’t have to attend school. My son was incredibly excited.

He came running out of class at the end of the day, saying “MUM! Mum! Guess what!! It’s the Queen’s birthday tomorrow!”

Me: “Yes it is, buddy. Guess what! She is in Perth at the moment, too!” ( for those who don’t realise, we live 450km away from Perth!)

His eyes light up and he went racing back inside to tell his teacher his latest findings. When he came back out of the class room, he announced “It’s the Queen’s birthday tomorrow, and we are going to her party!”

I had a little giggle, and broke the news: “Sorry, buddy. She isn’t having a birthday party, so we aren’t going!”

"But I wanna go!"

Well….the water works nearly started right then and there!!

“But…WHY???”

I had to go on to explain that she lives in England, in a big castle in London, and that is where she has her birthday parties. England is another country and there is a lot of water between Australia and England.

“But how do we get to England?”

I told him he could either fly over the water or go on a boat.

“But, I only have hands…I cant fly! *groan* I’ll have to go by boat then

I had to break more bad news…he still wasn’t allowed to go to England! But I gave him an option which made him much happier. I said he could write a birthday letter to the Queen, and I would send it for him.

He still talks about England constantly, I told him that he can go when he is eighteen years old and can get a passport to go (he really wants to see English snow!), and he¬†tells me every day “The Queen’s birthday is finished now!”

His card for her is nearly ready, but can anyone tell me where I can send it for him?

Bella ūüôā

15 movies to make you cry

My husband is away for the next four weeks, so I am busy stockpiling our movie supply to keep me occupied, mostly at night when kids have gone to bed.

I was in the mood for drama today, and watched Life as a House¬†(starring Hayden Christensen and Kevin Kline) and of course, by the end, the eyes were glistening with tears. It had me thinking what other movies had me shedding tears. So here is my list….feel free to add your own.

**Warning, if you havent seen all of these movies, there are some spoilers written**

The Notebook– This movie had me weeping like a baby! I don’t¬†think I have ever cried so much over a movie.¬†It has an absolutely touching ending. I don’t know of anyone who wasnt moved by it!

I gave this movie to my mum for Christmas a few years back. A couple of weeks later, I get a phone call from her, sobbing her eyes out. Once she could talk, I had to laugh when she said “Thank you for the DVD!! It was a beautiful movie!”

Braveheart-¬†Anyone you knows me, knows that I am obsessed with Scotland (though, I’m not really sure why) so it comes as no surprise that this is one of my favourite movies.

No matter how many times I see it, I choke up when Murron is killed and I cry when William is executed.

 

Neverending¬†Story-¬†When Altreyu is begging for his horse to move….my god!! Bawl factor!!

Then you are just about fist-pumping along with Sebastian by the end!

 

 

The Green Mile-¬†I couldn’t believe that this was a Stephen King story. I now have the books and love them. It has a great storyline and the end chokes me up every time! I watched this movie with my grandparents, and I could see my Nanna getting a little emotional too.

Tom Hanks is one of my favourite actors!

 

Armageddon- When she is saying goodbye to her father, or rather, when he was saying goodbye to all of them…..*sob*

 

 

 

The Color Purple- My sister-in-law recommended this movie to me when we were talking about emotional movies years ago. I was heavily pregnant at the time and already having mood swings. The story takes you on a rollercoaster of emotion. Great movie!

 

 

Walk to Remember- the wedding scene…don’t know of many people who have watched this movie who havent been affected.

 

 

 

Pearl Harbour-¬†I saw this at the cinemas with my History class in highschool fo ran assignment (even though the teacher didn’t¬†do his research on the movie before organising the excursion and admitted that it really didn’t have much to do with what we were studying…its was more of a love story) But all you could hear was stifled sobs at the end.

 

Looking for Alibrandi- Again, I saw this at the cinemas and we were studying the book in English class, but you could feel the tension and sadness in the cinema with John Barton’s death/funeral (except for the bit when there is a bird’s-eye¬†view of the coffin and a confused voice pipes up from the dark “What’s that?” causing everyone to giggle!)

 

Forrest Gump- Oh my! There are too many scenes in there that made me bawl to mention them all. It’s one of my husband’s favourite movies.

Again…Tom Hanks!!

 

 

I am Sam- Dakota Fanning is an amazing actress. Who could believe that much talent laid in a seven-year old? Absolutely beautiful storyline!

 

 

My Girl- Childhood death is always an emotional subject. All the actors in this movie did a brilliant job of bringing everyone to tears!

 

 

 

Patch Adams– You don’t see Robin Williams cry very often, but I was sobbing along with him over the death of Carin.

None of these are in particular order, though The Notebook was definitely the strongest emotional state I have ever been in! But I love each and every one of these movies. There are probably many more I can add to the list, but these are the ones that most stick in my mind.

What other movies can you add?

Bella ūüôā

GDD update

Sorry for being so quiet lately!! But I’m¬†sure you can imagine it gets pretty busy around here at times.

I have mentioned before that my eldest son has Global Development Delay (GDD). He was diagnosed with this about two and a half years ago, when he was around 4 years old.

We probably always knew that there was something “wrong” with him in the early years, but we kinda stuck our head in the sand with the thought “It’s all good. He will catch up in time!” But it was when he started kindergarten that the truth hit home.

We chose a very small private school, which my niece also attends and is flourishing. He was not toilet trained, but they were willing to work with us about that, well, they were at first. After that first day of school, one half day, the teacher came out to me when I was picking him up from, took me aside and said that we needed to get him in to see a speech therapist, occupational therapist,¬† and pediatrician urgently.¬†They informed me that it was in his best interest not to return back to kindy until he was a bit more “sorted” (for lack of a better term)¬†I was in a bit of shock, but I knew she was right. I spent the rest of the afternoon in tears though.

So we pulled him out for the term, hoping to at least get him toilet trained to send him back.  However, a term turned into a semester, and a semester turned into a year.

Over¬†the next couple of days, I sat down and wrote a list of things that didn’t quite add up. I wrote the little things like how he was obsessed with tags on soft¬†toys (he would wrap them around his fingers while sucking his thumb. It was his comforter. Cut the tag off and he wouldn’t touch the toy again) to the major problems like his daily multiple violent meltdowns that could last for hours, significant¬†speech delay, and the toilet training (or lack thereof)

I was surprised when I was finished that I had written three pages, back to front!

Looking over it all, a little voice in my head said “It sounds like autism!”¬† I did my research and found that I could tick off about 90% of the usual signs of Autism Spectrum Disorder. I felt, and still feel, that he had Asperger’s Syndrome, a form of autism on the spectrum. I havent mentioned everything that was on the list, so you may look and that and think “Nah, doubt it!”

As our town doesn’t¬†have a resident pediatrician, we have one that flies into town every few months, and there is a long waiting list.¬† So in the meantime, he started speech therapy and occupational therapy. We enrolled him in a daycare with a kindy program so that he could be around children his own age more often.

Last year, he started pre-primary. With the diagnosis of GDD, he was eligible for an education assistant during class. As he was (is) a flight risk, she would hover in the playground as well.

I have no idea where we would be if it wasnt for her!! She is an absolute star. She has the “My way, or no way!” attitude, which my son really responds to. Of course they batted heads along the way, but she was a huge helping factor in getting toilet trained during the day (which finally occurred¬†about halfway through last year), she helped to deal with his meltdowns and guided him through his school work. His teachers were absolute stars, they also had that “my way” attitude. I’m hoping to be able to get the same teachers for my daughter when she starts pre-primary next year.

He has had massive improvements this year since starting grade one. He has less meltdowns, and is slowly getting more conscious¬†of social standards, so he is making friends easily. The kids in his class are amazing. I would have expected some bullying, but they are completely¬†aware of his limitations, and realise he doesn’t always understand. They help to guide him towards the right outcomes.

But we recently had some fantastic news! I had a phone call from his occupational therapist who said she was 100% satisfied with his accomplishments in the last six months, and feels comfortable discharging him from OT. This is a major achievement. He still has a long way to go, but she felt that he would be able to accomplish this on his own (with help from teachers and his aid of course) I was jumping for joy after this phone call!

We have had a long battle over the last few years getting our son to this point. During his autism assessment, it was decided that while he shows autistic traits, it wasnt enough to put him on the spectrum. This was incredibly frustrating when I see/hear about other children who have the diagnosis, and show the same characteristics as my son! It wasnt helped by the fact that the assessors said had they seen him 6-12mths beforehand (as we were on the waiting list for the assessment for almost a year) he absolutely would have been diagnosed with ASD. Can you imagine hearing that? So we missed out on heaps of funding he could have had to help his learning at school. That is the most frustrating part.

For the moment, we will take this discharge as a massive positive…which it is of course!

Wish him luck fo his development in the future, and I will keep you posted of his progress!!

Bella ūüôā