Over the past couple of years, I have seen the online Down syndrome community get bigger and bigger. Our very elite "family" has welcomed many more beautiful babies with an extra chromosome, which is so very special. One of the best things about social media is that parents of kids with Down syndrome are now able to connect in a way they never could before. Even when Felix was born (8.5 years ago), I struggled to find others to share my thoughts with. To see that a whole new world has opened up to these new parents is the best!! The main reason I began this blog, many years ago, was because I struggled to find any realistic/current information on Down syndrome. I wanted to know what a day looked like in the life of a family with a child with Trisomy 21. All I could find was outdated information of doom and gloom. How lucky we are that things have changed so quickly over the past few years, and that there are so many great online resources for new parents!
For any new Mums in Australia, check out T21 Mum Australia Network on Facebook. https://www.facebook.com/t21mum/ There are private groups available for Mums with a pre-natal diagnosis or suspected diagnosis, and other groups which correlate with the age of your child. It's a great support network. Make sure you pass on the info to anyone else you know who would love to contact other Mums to share their thoughts and feelings.
What does a day in my life look like now that I have a kid, with DS, turning 9 this year?? Firstly, let me just freak out slightly that he is turning 9 this year....eeeeeek!! Where did that time go?
The biggest news of the past couple of years is that Felix toilet trained, during the day, completely, just after his 7th birthday. After years of gastrointestinal issues which really complicated things, and lots of trial and error with medication and diet, his stomach finally sorted itself out! Around his 8th birthday, he was also completely dry at night. This was a massive hurdle for us, and I am so proud of how well he has done. He has been completely dry at school for almost a year and a half now which is absolutely amazing and, although initially needing reminding, he takes himself to the toilet independently now. Its awesome!!
Back to our days... Thankfully, my little early bird is sleeping in these days until 6.30-7am, which my tired old body is very grateful for! I usually hear him in his room, having a chat to his stuffed animals or talking about his friends at school. He's pretty independent from that point on. He gets up and goes to the toilet, then heads out to the lounge room and either takes his iPad off the charger or turns on the TV and starts up the Wii until I get up to make his breakfast. He is WAY more tech savvy than me. Don't ever let him see you put the password into your phone...not even once! Just ask a friend of mine. She turned away for a second and he had unlocked her phone and was sending Snapchats!! Hahaha!
I recently made a visual schedule for Felix to use each day. He has a couple of different teachers and support workers during the week, plus therapies etc, and he likes to know what is happening each day. It helps him to know what he needs to organise, and what to expect during the day. He's very adaptable to change, which is awesome, but he's definitely a schedule person just like his Mum! Each night, as we tuck him into bed, we tell him what will be happening the next day. He gets super excited about what tomorrow will bring. He's such a positive little person!
Felix loves school, so it's pretty simple to get him ready in the mornings. He doesn't love unpacking his own school bag once he's there though. He would much prefer to help his friends unpack their bags. It's a work in progress, but I appreciate him wanting to be helpful!
School hasn't been without it's challenges. With each new year, brings a new teacher, new classroom, new students, different routines and dynamics. First term is always a big adjustment for Felix as he navigates the changes, and builds new relationships. This term has been particularly rough, not helped at all by lots of sickness. I've never seen a class hit by such an awful bug before. It certainly disrupted staff, and students alike! Felix was one of the last to get sick, but once he did, it knocked him around pretty badly.
Despite all of that, Felix has done pretty well with his school work. He is concentrating and engaging in his work for longer periods, particularly towards the end of term. He is nearly always keen to complete his homework. I get creative with his spelling word practice, and try to use alternatives to just a pen and paper. We will often write words in chalk on the pavement outside, use a whiteboard, wooden letters or the iPad. His spelling is progressing really well and he still loves to read, which is fantastic. He amazes me with some of the words he can read. Maths homework we do using counters or other visuals. Felix grasps concepts much more easily when he can see them laid out in front of him.
Weeknights, after school, are pretty cruisy with Felix. He is usually pretty worn out from school, so he relaxes for a while, playing in his room or watching his iPad. Weekends, and school holidays, are a bit different. Felix is still very active and doesn't like to just sit around, so I need to be one step ahead and have activities planned. I keep his "making box" well and truly stocked so we can do craft. He loves to paint, play with playdough and kinetic sand. He also loves to play games and do puzzles so we have plenty of both. Today I cut out a rabbit and chicken shape out of clear contact and stuck it to the window for him to decorate. He loved it! I try and plan lots of little outings or day trips away to keep him busy and stimulated. An active mind is a healthy mind, so I try to encourage that as much as I can.
What else can I say? Felix has impeccable manners, and rarely forgets to say please and thank you. His speech is developing beautifully, and he comes out with the funniest comments and stories. He has a great sense of humour and loves to make us laugh. He still has an amazing gift of empathy and is very sensitive to you if you are having a bad day or are feeling upset. I honestly feel so blessed to have him as part of my life.
Actually parenting an 8.5 year old child, with Down syndrome, isn't a lot different to parenting a typical child. In fact, like I have always said, children in general ALL have their challenges. It's a different type of normal. It's certainly our normal now, and I couldn't imagine life any other way!
