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 :)