Wednesday, 30 March 2016

School Days

New sight words. He was more
excited than he looks! :)
Felix was SO glad to be going back to school this morning. He couldn't get his uniform on quick enough, and was chattering away about it all morning. First it was "School...playground", followed straight afterwards with a long list of all of his friend's names. I love seeing him so happy to go to school. It makes all the nerves and anxiety I felt, in the months leading up to him going to school, fade into the background.

Felix is a stickler for routine...with everything!! School is no exception. I work at his school a couple of days a week so, on those days, he likes to help me get organised too. He takes my car keys and locks the car, then walks to the staff room with me and puts my lunch in the fridge and makes sure my bag is put away. It's adorable! I love our mornings together. We then head up to his classroom where he unpacks his bag and puts everything in the right places; communication book, library books, lunch box, reading folder, drink bottle and fruit, all in the correct spot. He has learnt it all so fast. After he has unpacked, he gets his school hat out of his tray, puts it on, and races straight outside to the playground for a quick play before the bell rings.

"Mum...stop with the camera flash!"
I was a bit worried that Felix would get lost in the crowd at school....literally. He's so much smaller than any of the other kids that I was sure he would be bowled over all the time. I shouldn't have been worried because he is so well looked after. All the kids know him by name, from the youngest kids to the high school ones. If he starts to head off to a part of the school where he's not meant to be, there is always someone willing to guide him back. If he refuses to come down from the playground, one of the bigger kids will climb up and slide down the slide with him. There is always someone walking past saying "hi" to him or giving him a high-five. It's just beautiful to watch. He's quite the little celebrity :)

Felix was very proud that he brought home some new sight words today. He read those and then wanted to read all the ones from previous weeks as well. I still can't believe his vocabulary. I'm honestly blown away by how many words he knows. He has always been interested in reading, but that brain of his has obviously retained so much of what we have read to him and exposed him to through lots of reading activities and games. It has taken time and hard work, but has never been a chore. Felix has always loved to learn and, to see it paying off now that he is at school, is so rewarding. He has been smashing stereotypes since he was just a tiny little guy. He signed his first word, "butterfly" at 8 months old, and hasn't stopped since. Super proud!
Cuddles with his puppy before bed.

I'll miss picking him up from school tomorrow. I've got to head to the city to spend some time with one of my gorgeous older boys. He's not quite as cute, but he gives pretty good hugs! I'll probably be too cranky and tired to blog tomorrow hopefully I'll have some interesting rambles in a couple of days!

Tuesday, 29 March 2016

Bouncing Back

Those eyes!
One of the things I was worried about, when Felix started school, was how his immune system would cope with all the extra bugs and germs that he would be exposed to. Winter, during kindy, was often tough, but that was only 5 days a fortnight and school is 10. It is currently week 9 of an 11 week school term and, amazingly, he has only missed 3 days with sickness despite his restricted diet that doesn't allow for a lot of fresh fruit and vegetables. I'm very thankful for an excellent multi vitamin, probiotics and other supplements. They're definitely worth it!

Sound asleep.
His nemesis has always been croup. He starts off with the slightest runny nose, and by night time can be barking like a seal! He had one night of suspicious coughing last week, but was fine the next day. Yesterday, I prepared myself for the worst when he fell asleep in the middle of the day. Felix never sleeps during the day. He is like the Energiser bunny and bounces around from 6.30am, until he goes to bed at 7.30pm. Within an hour or so he had a fever, so I held my breath and waited for the coughing to start. It didn't. Instead, he threw up once...thankfully, not too much, but I wasn't looking forward to washing sheets and changing bedding all night! He seemed a bit better when he went off to bed and, I was so happy when he slept all night with no more vomiting!! Yaaaay!!

He stayed home from school today and, when I got home from work, he was back to his usual energetic self. He was keen to do his homework and read his readers, and do some other reading activities on his ipad. He ate a bit of dinner, and rode his little bike around while wearing my boots (as you do). The funniest thing was his game of "Duck, duck, goose!" He made a circle, using halves of his plastic Easter eggs. They were the other "people" in the game. He sat in the circle and touched the eggs and said "duck" a few times before one of them was the goose. He then made the egg chase him around the circle until he sat in that egg's spot. Sometimes he had to chase the egg, and other times the eggs chased each other. I love watching him improvise when he doesn't have other kids to play with. He's such a funny kid!

I mentioned in a recent blog that Felix has just had blood taken to test for a whole bunch of things. I got a call from the medical centre today to say that the Doctor wants to see me to talk about the results. They said it wasn't urgent, so I'll breathe easy, but I'm interested to hear what she has to say. In the meantime, I'll enjoy the fact that I have my healthy boy back again. Hopefully he'll be off to school tomorrow, wearing out his teacher instead of me ;)

Sunday, 27 March 2016

Easter Bunny

Felix with his haul
These plastic eggs were a hit!
The Easter bunny had a bit more of a challenging time, trying to find little gifts for Felix this Easter. In the many months break I had from writing my blog, Felix has had a lot of issues with his bowel. He was diagnosed with SIBO (Small Intestinal Bacterial Overgrowth). This was treated with an aggressive course of antibiotics twice, but is still causing him issues. Also, after a series of hydrogen breath tests, we discovered he had malabsorption issues to lactose, lactulose, sucrose and fructose (as well as gluten for other reasons). We have had many appointments with Gastroenterology and with a Dietician, As a result, Felix has been taken off all sugars. The hardest sugar to remove from his diet has been fructose because it's in pretty much all fruit and vegetables, limiting his diet quite drastically. Felix has always LOVED his fruit, especially grapes, bananas, strawberries and apples, so it has been really tough. There have been days when he has sat by the fridge crying because he couldn't have fruit. We stuck to the new diet very strictly for a couple of months and, since then, have been able to slowly introduce a few basic things. We seem to have struck the balance now. A banana a day seems to be OK, and he seems to be tolerating some veggies like spinach, mushroom and zucchini. Fingers crossed!! We're currently waiting on results from yet another bowel test, and some blood tests so, hopefully, nothing new rears its head over the coming couple of weeks.

Anyway....back to the Easter bunny.....
Due to all of the above, Felix can't eat chocolate. Thankfully he's not too much of a sweet tooth anyway, but he has always enjoyed the few little chocolate eggs he has found on Easter Sunday. This year, the bunny had to be a bit more creative, and come up with some different ideas. He did well because Felix absolutely loved his little Easter stash!
Easter bunny was here!

He got some plastic eggs filled with little plastic animals, miniature toy trains and cars, which he thought were great. All day he has been putting the toys back inside, and then opening them up again (the gift that keeps on giving). There were two stretchy plastic rabbits with lights inside that flashed when they were dropped on the floor. These have been thrown around the house and haven't managed to break anything yet. He got a plastic egg which, after sitting in water all day, hatched and a little bunny came out. There were new socks and a pair of firefighter pajamas. He even got a few small toy dinosaurs, because every occasion calls for a dinosaur!! Incredibly, the Easter bunny even found a few little chocolate bunnies which were sugar, lactose, and gluten free. Even more amazing is that they actually taste just like regular chocolate!!

The rest of the day was a pretty lazy one. Felix and I went to the park and he played on the playground for a while. He loves swings at the moment, so it went a bit like this...."Mum, push, high, please", so I obediently pushed him as high as I could while he laughed and laughed. Then it was, "Mum, stop!" I grabbed the swing and stopped it. He gave me a grin and, "Mum, push, high, please", followed a few minutes later by, "Mum, stop!" This repeated itself over and over until I finally told him that Mum was worn out, and maybe he should go on the slide for a while instead.

Be quiet Mum!
I'm a bit of an Australian Rules Football fan. My team had their first game of the season today so Felix and I dressed up in our team colours and sat to watch the game on TV.  Felix loves kicking the footy around and is getting really good at it. He often does it while we watch the game. What he doesn't like, though, is me yelling at the TV while the game is on. It was a close game, so I got louder as the game went on. Felix kept saying, "Mum stop!" or "Mum, noisy!" while covering his ears. He ended up deciding that wearing his earphones (which he uses in places that are too loud), was the best option. Oops!! I'll have to work on my volume control!

I hope you have all had a safe and relaxing Easter!  Thinking of my family and loved ones today!

Saturday, 26 March 2016

Road Trip

Last night the phone rang, and a very little voice on the other end asked, "Granny, when are you coming to visit?" It was my Grandson, Noah (almost 4). I asked him when he would like me to come and he replied, "Can you come tomorrow?" How could I resist?

This morning, Aaron (son #5), Felix and I got organised early, and left to drive the 200km to see Noah, and his beautiful sisters, Summer and Harper. Three Grandbabies in one day....I am one happy Granny!!
Felix has always been so good in the car. He never cries or gets upset...he's just happy to chill out and enjoy the drive. Now that he is talking a lot more, it's a lot of fun because he tells me what he can see out of the window. Today he was excited because he could see the moon even though it was daylight. He pointed to the left window and said, "Mum, see moon", and then pointed out of the right window and said, "Mum, sun!" Very observant, I thought.

Unfortunately, Felix has inherited my dislike of emus (possibly because of my reaction every time I see one). Today we saw about eight of them out in a paddock. They were fairly far away, so I felt brave enough to stop and try and take a photo. I said to Felix, "Can you see the emus?" He responded by trying to escape from his car seat, shouting, "No, Mum, no!!" Can't say I blame him. I jumped back in the car as quick as I could once they started moving!!

Felix loved spending time with his nephew and nieces today. Being the youngest in a big family, and having a ten year age gap between him and Aaron, Felix is a lot like an only child. Having nieces and nephews so close in age to him is just perfect. Although he is their Uncle, they are more like siblings to him. Hearing them all play together is music to my ears. I absolutely love it! I'm so thankful that he will be able to grow up with them. Thankful for him that he will always have family, his age, to interact with and share things with and, thankful for them that they will always see people with Down syndrome as "no big deal". Felix has been in their lives since the minute they were born so to them, Felix is just Felix.
Uncle Felix and Noah

I took the boys down to the beach this afternoon. There was a special event on down at the foreshore, so I thought it would be fun (and it's an excuse to go to the beach...Felix and I both LOVE the beach!) There were giant kites floating up in the sky which Felix thought were amazing. He didn't quite know where to point first. For half of the time we were there, all I heard was, "Mum, kite!" That was until he saw the helicopter giving rides to people. It would go up in the sky, circle around and then come back in to land again. He couldn't take his eyes off it, so the repetitive phrase became, "Mum, yellow helicopter" over and over again. Joel (son #2) and I decided to take Noah and Felix closer to where the helicopter was taking off and landing. We sat on the grass, and the boys happily sat for ages, chatting and pointing. Felix would sometimes say something to Noah in jibberish, and Noah would answer him as if he knew exactly what he was saying. It melted my heart just a little bit!
"Mum...yellow helicopter!"

We spent the last part of the afternoon on the playground. Felix could play on a playground for hours...literally! For a kid with hypotonia (low muscle tone), who tends to tire very easily, he has boundless energy when it comes to climbing, sliding and swinging. I was exhausted after ten minutes but, he was still going strong two hours later. Watching his dexterity and strength, I'm always reminded again of the prognosis we were given before he was born. The Geneticist told us he would, "probably not walk or talk or be able to feed himself" (among other things). Today I marveled at my perfect little man confidently navigating the playground, keeping up with the other kids, and having a wonderful time. He makes me so proud!

After exerting all that energy, I was sure that Felix would fall asleep on the 2 1/2 hour drive home because it was close to his bedtime. No... he happily munched on his snacks, pointed out the occasional sheep or cow, and played on his ipad. He's such an easy kid!
Felix's newest niece; little Harper

Well...I hope you've all left a carrot out for the Easter bunny, and he leaves you something yummy! Enjoy your Easter celebrations tomorrow!

Friday, 25 March 2016

Easter Friday

A perfect handprint!
Anyone who knows me can tell you that I'm a sucker for occasions. I love Easter, Christmas, Halloween, St Patrick's Day, Thanksgiving etc. Any excuse to decorate the house, bake some themed cookies or do craft things with the kids and I'm in my element!!

Before Felix came along, the older kids (aged 10 and up at that stage), were starting to wane in their excitement to make things. I could convince them to stick lollies on a gingerbread house (once I'd done all the boring bits), or dress up for Halloween (after I'd decorated the house) but, I knew my days were numbered before they would lose interest and prefer to spend the time on the Playstation instead (speaking about the 5 older boys, of course).

That tickles Mum!
Along came Felix!

Within weeks of his birth, he had his hands and feet painted, several times, to send to friends and family. As he grew, we regularly ended up covered in paint and glitter. We made things out of pipe cleaners and cotton balls and squished playdough between our fingers. There were many times I looked down at my shirt, while out in public, to see a splash of paint, or had to pick a bit of dried glue out of my hair. Making things with Felix has always been very messy, very enthusiastic and filled with lots of giggles.

At Christmas time, my little Picasso makes wrapping paper with potato stamps and paint, until such a time as he gets too enthusiastic and it ends up being a finger painting with a few footprints (which family members usually prefer anyway!) We always make a new decoration for our tree, and he proudly hangs his finished creation....then takes it off....then puts it back on....then takes it off. You get the picture ;)
Felix's rAB..BiT

People often comment on how clever I am for the ideas I come up with to make with him. The truth is, there is no cleverness involved. Thanks to the power of the internet, I'm able to find ideas that "actual" clever people have come up with, and steal them and use them with Felix. Genius! A big shout out to all of those people who lay awake at night, working out how to design a tractor made of egg cartons, a kitchen made from cardboard boxes and foil,or a puppy made out of cotton reels! What would we, mere mortals, do without you?

Today, Felix and I made a chicken using his hand and toe prints (thank you Pinterest). There is nothing Felix loves more than having his hands and feet painted. He thinks it's hilarious so, he was very excited when he saw that I had pulled the paints out of the cupboard. He sat as still as a statue while I painted his hands and then very carefully pushed his hand down on the paper. He's quite professional at it these days! He did the same with his feet, giggling as I wiped the paint off before he was able to run off and stain the carpet. After the paint was dry, I finished off the chicken by gluing all the pieces on. He took one look at it, threw his hands in the air and said, "Oh wow! That's good!" At which point, I got a bit teary because he spoke, yet another, very expressive sentence!

A really beautiful thing, about people with Down syndrome, is that even as they get older, they still love celebrating occasions. They often have an innocence and wonder that stays with them throughout their life. They love giving gifts. They get excited the night before Christmas, and will know where all the coolest fairy lights are. They will countdown the days until their birthday and remind everyone they see, that it's only so many more sleeps away. I often think it would be beautiful if the rest of us were more like that. We get caught up in the stress and worry of life and forget to enjoy the simple things. Felix has reminded me that it's OK to take a step away from the craziness of life sometimes, and to do things that are spontaneous and fun. I love creating memories with him and seeing the pure joy on his face when he does something he enjoys. I'm looking forward to many, many years of listening to his laughter as I share new experiences with him.

Tuesday, 22 March 2016

Little Monkey

I finished work early today, so I was able to sit outside Felix's classroom and wait for him to finish. A couple of his classmates came outside to get their school bags and stopped to chat with me. The first one said, "Felix was naughty today, he was cutting things he shouldn't have been!" The second interjected with, "He was drinking out of everybody's drink bottles!"  I had to have a bit of a giggle. Our little monkey isn't going to be able to get away with much without someone letting me know!!

Much as I don't like it when he misbehaves, it does make me reflect on how far he has come. It has taken him a really long time to learn how to cut things successfully. He obviously did it quite well today, despite the fact that he was cutting something he shouldn't have been cutting. I have to be quietly proud about his newly acquired skill. As for the drink bottle...until December last year, Felix was only able to drink from a straw. We worked really hard with him over the Christmas holidays to teach him to drink from an "age appropriate" drink bottle, and in mid-January, just before he started school, we had success. He hasn't looked back! Drinking from other people's drink bottles while again, not acceptable, is his way of showing off something he has recently learnt how to do. Hopefully, over the coming months, he will learn to use these skills at more suitable times!

Felix has a few different things to do for his homework each night. He has a reader, which gets changed regularly (when I remember). He has sight words which he has to be able to read 100% correctly before he moves up to the next level. He is currently on list 6 of the Oxford word list, and absolutely loves practicing them each night. He also has some spelling words, and phonogram sounds to practice. He has a packet of laminated alphabet letters to spell out the words as I read them to him. Tonight I asked him to find the letters to spell "hen". He seemed to be taking a long time and, when I looked, all he had was the "e" and the "n". He's usually really quick to find the correct letters, so I was a bit surprised but, when I looked for the "h" I couldn't find it either. I asked him to check in his bag, and within a minute or so, I heard his little voice say "here it is!" No big deal for most people, but it's not often he strings three words together so I always get a bit excited! After his homework tonight, he had a bath. I started to wash him and he said, "No Mum, stop!" Two sentences within an hour or so... very cool, and very typical of a boy who would rather be dirty than clean!

Monday, 21 March 2016

Happy World Down Syndrome Day 2016

Felix and I with our odd socks
Today is March know what that means? It's World Down Syndrome Day! Why March 21?

The date represents the 3rd copy of the 21st chromosome present in all people who have Down syndrome....the 21st day of the 3rd month. Pretty cool hey?

We love celebrating WDSD. It's a day to reflect on the positive ways Felix, and his friends, have impacted our lives and the lives of those around us. It's a time to celebrate diversity and inclusion, and how wonderful it is to have so many different people in our lives. It's a day to remember that, despite our race, ability, sexuality or religion, we are all people with so much to offer the world and each other.

We had a fairly low key WDSD today because Felix had school. We made sure we were wearing our odd socks to show that people with Down syndrome are more alike than they are different. I painted my nails yellow and blue for Down syndrome awareness, and Felix gave his teachers and support workers gifts of odd socks and a little note about World Down Syndrome Day.

Two of Felix's friends showing their support today

A couple of Felix's support workers opened their gift and put on their odd socks, even though they were wearing shoes that looked a bit strange with socks. They looked hilarious but it made it even more special that they were happy to stand out and celebrate the day with Felix. When Felix got to school in the morning, several of the kids came up to him and showed him they were wearing odd socks too. I did get a few tears in my eyes when I saw that other people had remembered. It really means a lot to see others get involved in the fun, and show their support for Felix!

It was a busy day!

Felix finished the day with a Doctor's appointment to organise his next lot of blood tests for tomorrow morning. Even though it's been a fun day, life still goes on and the medical stuff doesn't go away. In saying that, today has reminded me that no matter what highs and lows we go through with Felix, there are so many people who are there, supporting us every step of the way.

Right now, Felix is sitting on the couch. He has one shoe on and one shoe off. He's eating a packet of veggie chips, and playing bowling on the Wii from his seat on the couch. He has a dirty face, and looks like he could fall asleep any second. He looks just like a typical boy who has had a really good day!!

Happy World Down Syndrome Day!!

Sunday, 20 March 2016


My joy boy
It's been so long since I last wrote, that I'm going to re-introduce myself and Felix. Before I do, I just want to say thank you to all of those who have contacted me (while I've been absent), via email or through my Facebook page tell me about the amazing people in your life who have Down syndrome, to ask questions, or to give me words of encouragement. You're all awesome and it makes me so thankful to be part of this big, worldwide community!

So, here goes....let's start again..

I've had 9 beautiful babies; 6 handsome boys and 3 beautiful girls. My youngest daughter was stillborn in 2004. The older kids partners are all amazing people and I have 4 exceptionally gorgeous Grandchildren... 1 Grandson and 3 Granddaughters.
Bathtime selfies with Mum

Felix is the littlest of the bunch, and was born in September 2010 after a suspected pre-natal diagnosis of Down syndrome (Trisomy 21) and hydrocephalus. My pregnancy was a very nerve wracking time, with the Doctors telling us to prepare for the worst. They said he probably wouldn't survive the pregnancy due to the ventricles in his brain being enlarged to fatal levels. My Obstetric team had never actually known of a baby with Trisomy 21 and hydrocephalus, and there was talk that maybe Felix actually had Trisomy 18 or 13 instead (both of which have grim outcomes).

At the end of September, 4 weeks before his due date, our sweet little Felix arrived. Those beautiful almond shaped eyes melted my heart instantly. I was in love!
First day of school...eeeeek!

In the days that followed, Felix spent some time in the special care unit getting his strength up to learn to breastfeed, but was otherwise given a clean bill of health. His Trisomy 21 (Down syndrome) diagnosis was confirmed, and in the coming year, his hydrocephalus diagnosis was changed to ventriculomegaly as the fluid levels stabalised on their own.

For a more detailed pregnancy/birth story, check out my blog from February 2012 .

Fast forward 5 1/2 years.....

SO much has happened since I last wrote. Felix graduated from kindergarten in December last year after 18 months of learning and growing. His development, under the care of such amazing staff, and shared with some incredible peers, went through the roof. By the time Felix finished kindy, his reading was at a level far beyond his years. He was able to read the roll, recognising and speaking all of the other student's names. He could read simple sentences, and had a huge sight word list. His speech had developed really well, helped along by the interaction he had with the other kids. Best of all, though, our shy little boy who was initially too scared to eat in front of other children, sat with the rest of the group eating his lunch. It was difficult to pick him out of the group of kids...he was one of them!
It was difficult to say goodbye to the safety and security of kindy, and send Felix off to school this year. The process of enrolling a child, with a disability, into a mainstream school is a challenging one and not for the faint hearted. There is the Psychological examination (don't get me started on that one). The Mummy heart in me wanted him to show the Psychiatrist how clever he was, but the logical side of me hoped he would fail the test dismally in order to receive the maximum amount of support he could get at school. There were meetings, toileting plans, adjustments to the classroom, sensory boxes/cushions to organise, visuals to print off,  safety issues to discuss, more meetings..... and the list goes on. I will be brutally honest and say that I had tears (and a couple of tantrums), wishing we could just send our amazing little boy off to school like any other kid. BUT... we got through it!        *** A special mention goes to the staff at his school who have bent over backwards to do everything they possibly could to make Felix's transition a happy and settled one!! Thank you, thank you, thank you ***
Sight words
Riding for the disabled

It is currently the beginning of week 8 of school. Felix is settling in more and more each day. There have been a few little teething issues; trying to work out where best to use Felix's support hours,  his concentration levels, learning the new routine, and his uncanny ability to climb anything he can find (even the sink in the classroom), but he's certainly not the only 5 year old boy who finds sitting still for extended periods a bit hard. He is zooming through his readers and his sight words, and insists on doing his homework every day...even on weekends!!  The kids at school have been THE BEST! He always has someone looking out for him, pushing him on the swing, or reminding him to go back to class when the bell rings. These kids are a huge blessing, and I am so thankful for them because I know he is in such good hands.

Felix is starting to construct sentences more and more, and makes us laugh so much with some of the things he says. He is so animated when he talks, with funny facial expressions and gestures. If he really wants to make his point, he will sign and say something at the same time, just to be sure we're paying attention. We have finally found a new speech pathologist, after a really long break, so we're looking forward to her starting work with Felix and fine tuning his speech.

He is still doing hydrotherapy and also horse riding, which he loves. He does land based physio on days when he is really tired or a bit unwell. We have seen a big improvement in his core strength and will definitely be keeping up the therapies as he grows. He sees them as a bit of fun which is a bonus because they are also making him stronger. Last week Felix participated in sports day and managed to compete in every single event, even though his hypotonia (low muscle tone) makes him have to work so much harder than the other kids. All those years of therapy are definitely paying off!!

Hydrotherapy fun!
Felix is still my absolute joy. I don't know what I did to deserve such an incredible little boy, but I'm so glad I did it :)