Monday, 20 March 2017
Why celebrate World Down Syndrome Day? When your child is diagnosed with Down syndrome, there are parts of your life that change forever. You are thrust into a world of medical appointments, therapies, advocating, researching, and days when you are on an emotional rollercoaster which would rival any theme park ride. It can be tough. There are days when you feel resentful; not of your child, but of the diagnosis that has robbed them of their health and their acceptance by society. There are days when you are angry at people's ignorance, and furious at the stares and the pointing as you walk through a shopping centre. There are days when you want to cry. No..... there are days when you DO cry, because you feel overwhelmed. You are tired of the appointments. Tired of the phone calls you have to make to get the support you need for your child. Tired of feeling like the neuro-typical people in the world do not understand your child or your life. And there are days when you are just plain sad, because people don't see your child through the same eyes you do. They don't see their beauty, their spirit, and the wonderful things they can offer the world.
Since I knew of Felix's diagnosis, half way through my pregnancy, I changed. I began to see life differently to the way I had seen it before. I started to see how precious life really was. Felix's life, outside of my womb, wasn't guaranteed. We were told "This isn't going to end happily." He was expected to pass away before he even took his first breath. Each day from that point on, although tainted with grief, was a gift. I celebrated each movement and kick. I got pregnancy photos taken, and some amazing friends booked a 4D scan so we would have as many photos of our little man's face to remember him by if he passed. A diagnosis of Down syndrome, at that point, became irrelevant. I was in love with my baby just as I was with my babies before him. The love was just as strong even though he wasn't "perfect" in the eyes of the world. In fact, I felt a fierce protectiveness over him that I had never felt before.
My love for Felix was strong during my pregnancy but, when I laid eyes on that little face and saw those facial characteristics, so typical of a baby with Down syndrome, that love grew and filled my heart so much it could have burst. Nothing has changed in the past six and a half years. Felix has taught me to embrace life, to take risks, to love deeper, to be patient, to slow down, and to laugh more. More than anything, he has taught me to laugh. Not a day goes by that Felix doesn't make me laugh. He is so intuitive, and is so empathetic if someone is feeling sad or low. One smile, or funny comment from Felix, and I feel better. He loves life, and that love is infectious. He jumps in puddles, he lets the sand run through his fingers, he notices the tiny bugs in the garden. If the moon is visible in the sky, during the daytime, he will show me. He loves his family and his friends and loves nothing more than giving huge hugs. If Felix loves you, and you don't like anyone in your personal space, he will rectify that really fast!
So, why celebrate World Down Syndrome Day? For me, it's a day that celebrates love. It's a day when I take some time out to reflect on how Down syndrome has impacted on my life. It's a day to celebrate diversity and the lessons we can all learn from people whose paths are different to our own. It's a day to recognise ability, and the fact that people with Down syndrome are capable of incredible things. It's a day for me to be thankful for the people I have met because of a tiny little chromosome. These people have become such an important part of my life, I can't even remember what life was like without them. It's a day to be thankful for the family and friends who are a constant support to me, and love Felix unconditionally. It takes a village to raise a child, and Felix's village is doing a fantastic job!
More than anything, World Down Syndrome Day is a day to celebrate Felix's life; the life of a six year old boy who loves to play in the dirt, and climb anything and everything. A boy who is obsessed with the alphabet and loves to read. A boy who loves to collect the eggs from his chooks and throw them some grain. A kid who has an amazing sense of humour, and laughs harder than anyone else at his own jokes. A little boy who is so polite, he even says thank you to the Doctor after a blood test, even after yelling "stop please" when the needle went in. A little boy who loves to rough house and sometimes gets a bit carried away and has to be told off. A kid who can make his own sandwich and can make me the best cup of tea. A kid who is excited to go to school, every single day, and even asks to go on the weekends. A kid who chose me to be his Mummy. I will be forever grateful!
Happy World Down Syndrome Day!
Posted by Felix's Mum at 17:24
Thursday, 12 January 2017
|Felix with his new words|
The first thing I did, was to get some advice from a couple of people who have been working with individuals, with Down syndrome, for over twenty years. These ladies have seen what works and what doesn't work with our kids and understand the way they learn which, generally for kids with Down syndrome, is very visual. After talking to them, I invested in a laminator, started up the printer, and made sure I had plenty of photo paper and ink.
|Laminated photos and words|
Next, print up a photo of each word you've chosen (and laminate it for longevity), and print up the word in a simple font in a decent size. Once that's done, choose two of the words initially, and show your child which word belongs to which photo. After they have seen you match them up a couple of times, give them the words and tell them it's their turn. If they don't get them right, don't say "no" or tell them off, just say, "I think they might go here", and put the words under the correct photo. Don't make your child sit for longer than they want to. You want it to be fun. If you see them getting bored, finish up and try again another time. They will probably only want to sit for a couple of minutes initially.
|Another home made idea that Felix loves|
Once they are matching the words to the two photos easily, change it up. Put the words down first, and get them to put the picture next to the correct word. If that's too easy, see if they can tell you what the words are without the photos. When they are 100% correct every time with the two words, add another two, so they're matching four, and so on. Always make sure they know them perfectly before you add more. If frustration creeps in, and you get annoyed with them for taking to long to learn it, they will lose interest, and you'll be back to square one again.
|Splashing in the dirty water with the dogs|
Once he started being able to read the words without the photo prompts, we saturated him with the words in other forms. We wrote them on blackboards for him to read. We painted words and wrote words in different colours on paper. We used alphabet letters to spell out the words. In no time at all, he was writing the words himself, or spelling them out with letter cards or alphabet puzzle pieces.
The visual thing is quite interesting. If I ask Felix to spell "zebra", he will say "z...e....b...". then, if he can't remember the next letter, he closes his eyes and writes it in the air with his finger "z...e...b...," then opens his eyes and shouts out "R" then says the "a." It's like he actually has to close his eyes to see the sight word in his head, and then is able to spell it out loud. About 98% of the time, he is able to remind himself this way, and spell the word correctly.
Due to Felix's interest in reading, I have collected a lot of resources along the way. I've managed to find packs of sight words, matching games, colours, shapes etc etc from places like Kmart and Big W really cheaply. I leave them where Felix knows where they are, and he often goes and helps himself to them, and sits and "learns". He has his favourite things to do. He still loves the matching photos and words (we have made him two new packs recently.) I think he likes them because they are words he can relate to, and photos of things he's familiar with. We have several alphabet puzzles and stamps which he plays with every day too. The alphabet is still very much his favourite thing....
|Crafty fun before Christmas|
Felix now has a huge sight word vocab, and doesn't need photos when we introduce new words anymore. Repetition seems to be enough for him now, so he has been able to use the Oxford sight word list, exactly the same as the other kids in his class at school and is keeping up with the typical kids his age. We still need to make sure we put in extra time with him because, obviously, he needs a bit of extra time for comprehension and actually speaking the word isn't always easy for him. It's funny how he can read better than he can actually speak. He can read the sentence, "Mum, could you come into the kitchen please?", but if he was asking me that in every day life, he would just say, "Mum, come here please."
|Love this kid!|
|Hanging out with the chooks|
Firstly, I just want to say that I am not a teacher. I don't claim to be an expert on teaching a child to read. The following is just my own personal experience with Felix and what has worked for us. Secondly, every child is different. Some kids love to read, and others hate it. Each of our 8 kids have all been keen readers but we had no TV in the house for years so reading was the alternative for them. My kids have all had some friends who were never interested in reading, but excelled in other areas instead. Similarly, I have adult friends who only read when they absolutely have to. If your child is not interested in reading, even after trying everything, you're not doing anything wrong. It may not be their cup of tea..... but they will get it eventually!
We were lucky enough to have a pre-natal diagnosis with Felix. I say lucky because it meant we were able to make plans, research, ask questions, and have conversations about things we wanted to put into place for him. We knew the sky would be the limit for him but, initially, we focussed on the basics. We wanted him to be able to walk, talk, read, write, be kind and loving, and have beautiful manners. I'm proud to say, that at six years old, he has accomplished all of those things.
Anyway...back to speech...
Initially, during my pregnancy, I read up on breastfeeding a baby with Down syndrome. Breastfeeding helps with tongue control and mouth placement so, it was important to me in those pre-speech days, to get him off to the best start by breastfeeding him if I was able to. Breastfeeding him was definitely not easy, and I'm thankful I had 7 successfully breastfed babies under my belt to give me some experience. I persisted, and fed him until he was 18 months, when he weaned himself.
Sign language has been discovered to be very beneficial in developing speech, contrary to the outdated view that using signs will make your child become lazy and refuse to speak. We started signing with Felix when he was only a few months old. By 8 months old, he used his first sign, and we were amazed at how quickly he picked them up. Even though he didn't use verbal speech until around 4 years of age, from 12 months onward, he could sign more words than typical kids would have been able to speak at the same age. I even insisted he sign "please" and "thank you" years before he could speak the words, which was pretty adorable!
Felix's ipad was a pivotal part of his speech and language development. He got it just after his second birthday and, up until recently, it has always only had educational apps on it. I can honestly say that the ipad apps taught him so many things way before I even thought about teaching them to him. I remember being blown away that he knew all of his colours (and I mean ALL....even grey and silver!) It was the same for shapes. I know adults (myself included) who couldn't tell you what a trapezoid is, but he nails it every time! All because of using the educational apps on the ipad on our long drives to the city. I figure, if he's going to be using an electronic device, he may as well be learning from it.
|Growing up so fast....|
Being our first baby in a very long time, and an extra special one at that, I tried to focus on buying him toys and puzzles with some sort of educational value; cause and effect, shape sorting, matching etc. With a bit of luck, those were actually the things he was naturally drawn to, and he developed a love for letters and numbers very early on. From birth, he had a whole wall covered in alphabet letters and he was fascinated by them. I think all of these things combined, contributed to his speech development, and ultimately his ability to recognise letters and read.
Felix has had a Speech Pathologist off and on since he was tiny. To be honest, these have been very hit and miss for us. I would say, for the first 3 years of his life, his speech therapy was a bit of a waste of time, as his therapists were very new to the job and none had ever worked with a child with Down syndrome before. Recently, however, we have found an amazing speechie who visits Felix at school, and works with him there. She goes out of her way to go the extra mile for him and she has fantastic suggestions, which she regularly communicates to us. Felix loves her!
I could go on and on, but that is a basic overview of Felix's speech development and the things I think have helped us get to the stage we're at now. Good luck to those of you walking a similar path at the moment. There will be times of discouragement, and days when your child doesn't seem to be making any progress at all. Those months and years waiting to hear that first word can be agony.
I've been there many times in the past 6 years and I'm under no illusions that I won't shed many tears in the years to come. Hang in there....our kids are so worth all the hard work!!
In my next blog, I'll talk about some of the practical things we have done to teach Felix to read.
Friday, 6 May 2016
|Felix and his doll (who also has Down syndrome)|
It was that time of night when, after a day at work, you look in the fridge and think, "What can I cook for dinner?" The uninspiring contents of my fridge stared back at me so, I decided to bundle Felix up into the car, and go to the supermarket for more inspiration. It was still daylight when we arrived at the shop.
|"Wearing" the little guy|
|Climbing a tree before school this morning|
The next moment was so beautiful. He started to sing Twinkle, Twinkle Little Star. He didn't look at me. He kept his eyes on the stars. The most special bit for me was that he spoke the words in the song more clearly than ever before, and didn't stop gazing up until the whole song was finished. It melted my heart to watch him and, all the stress I was feeling up until that point, disappeared. As usual, the little guy worked his magic and filled my heart. He always knows just what I need!
Posted by Felix's Mum at 04:21
Wednesday, 4 May 2016
|The newest little star in the sky!|
I have felt so many mixed emotions this week. I have felt so much sadness and cried many tears. I have felt angry that a precious little man was taken from such a beautiful family. I have felt joy as I've watched Felix play, and I've laughed at the funny things he's said and done. I've also been frightened about his health. To be honest, I have been terrified about it. Nicholas, like Felix, had always been really healthy. None of us are promised a tomorrow, so it's another reminder to live each day fully and love deeply. More than anything this week, I have held Felix tighter than I have in a very long time.
Yesterday, as I was driving home from work, I saw a huge rainbow in the sky. The longer I drove, the bigger it got until I could see the whole arc from one side to the other. I stopped the car several times to take photos of it. Some of you might remember my rainbow story. After we were told, at the hospital, that Felix probably wouldn't survive, and was likely to pass away in the womb from issues with his brain, we saw a rainbow on the way home that day. Every fortnight, after that, as we drove 200km to the hospital for appointments, we saw another one. Seeing the rainbow brought me a peace that Felix was going to be OK. Ever since then, a rainbow makes me think of Felix. After a radio interview I did, a few years back, they played the song "Somewhere Over the Rainbow". When Felix graduated from kindy last year, what song came on as his face appeared on the power point presentation? Yep...."Somewhere Over the Rainbow".
Yesterday, when I saw the rainbow my thoughts went straight to Nicholas. When I saw that enormous, colourful arc, bursting through the clouds, I could see his sweet little face in my mind; his bright blue eyes and the blondest hair you've ever seen. It was just like he was reminding us that he's still around. I cried as I drove; tears for his family, tears for the unfairness that his body is no longer here, but thankful for the reminder that he lives on in our hearts. Sleep sweetly Nicholas x
Posted by Felix's Mum at 05:10
Friday, 29 April 2016
|Road trip to the hospital|
Felix only has two ongoing health issues. Croup, which likes to rear it's ugly head in winter, and some bowel issues which we're still trying to get on top of. I don't usually go into a lot of detail about his medical issues, but I've had so many people asking how things went at the Gastroenterologist and Dietician yesterday that I thought it was easiest just to blog about it. Poo story to follow......
|That face <3|
Felix's diet has a very delicate balance. As mentioned before, he has malabsorption of all of his sugars, including natural sugars in fruit and vegetables, and the lactose in dairy products. He also has a bacterial overgrowth in his bowel that has been treated a couple of times, but doesn't seem to go away. If he eats any sugar, the result is an overactive bowel which, without too much gory detail, means he spends a lot of time in the bath, sometimes several times a day. He also has a gluten intolerance. If he eats gluten; bread, pasta etc, it has the opposite effect and he gets completely blocked up. Last year, he was so blocked up, he didn't use his bowel for 8 days. He had foecal breath and wasn't responding to even large doses of laxatives. He was incredibly distressed and in a lot of pain. It was a horrible time.
|Writing some words in the|
Yesterday we went to see the Gastroenterologist first. He explained that, as we suspected, we still hadn't given Felix enough gluten for them to get an accurate result on the coeliac blood test. He has suggested Felix eat gluten regularly for the next 4 months and then have another blood test. Alarm bells went off immediately in my head because I know what happens when Felix eats gluten and I don't want him to be uncomfortable and/or in pain for the next 4 months. He suggested that we give Felix daily laxatives to counteract the gluten. He said that, depending on the next lot of blood results, Felix may have to have an endoscopy and biopsy of his bowel under general anaesthetic to find out exactly what's going on. I know it's not a massive surgery compared to what a lot of parents see their kids go through but, he's already had about 6 generals since he was born, so I'm not in a rush to put him under again. It never gets easier and there are risks involved with any surgery. Sigh!
|Strapped in for the 200km drive|
I know a lot of parents will agree that, when you see a whole bunch of different specialists, it can be really confusing. They won't always be on the same page and you often need to get second opinions or just trust your own instincts. Special needs parenting is a complex business. You tend to become an expert on your own child's medical issues. You spend hours researching, making phone calls, sitting in waiting rooms and advocating on behalf of your child. It can be exhausting, but is also incredibly rewarding when you see your hard work pay off. The next few months are going to be challenging but, one step in front of the other, right?
*Special mention to those who have messaged to check on the little guy... your messages always warm my heart!
Posted by Felix's Mum at 03:24
Wednesday, 27 April 2016
|Such an outdoor boy|
A friend of mine shared something on Facebook today about how fantastic it was to watch her little boy (the same age as Felix and also rocking an extra chromosome), play on a local playground and interact with other kids there. She mentioned that it was one of the things she didn't think she would get to experience, when she was given his diagnosis at birth, and yet here he was doing the same as all the other kids. It struck a chord with me because I was thinking the exact same thing yesterday. I was waiting at a playground, for a friend to arrive, so Felix raced straight onto the playground to play with the other kids. Watching him climb quite difficult parts of the playground, race up ladders and run across bridges, it was just like watching any other child his age. I didn't have to get up and rescue him. In fact, I didn't have to help him with anything. He was a five year old boy, doing what 5 year old boys do. The other kids talked to him, took turns with him and pushed him down the slide and he did the same with them.
|There's nothing he won't climb|
|Felix and his 'little' mate|
I worried, just like my friend, that Felix would be the kid at the playground who no-one wanted to play with. I pictured him being pushed around and called names until he cried. With the prognosis we were given, due to the Down syndrome/Hydrocephalus diagnosis, I couldn't even picture him walking, let alone climbing up the slide the wrong way! How naive I was! At this point in his life, Felix is surrounded by friends who want to play with him. He is invited to parties, and kids run up to him at the shop to give him a high 5 or beep him on the nose. Is it always going to be like this? Possibly not. As kids grow, their values change and some, unfortunately, lose their inclusive natures. I'm sure there will be times when Felix is teased or excluded. For now I choose to be thankful for the positive experiences we are having, and to proudly watch Felix smash stereotypes every single day and do things I never thought possible.
I'm not saying I'll never worry, or I won't sometimes get ahead of myself. I'm a Mum. It goes without saying that I will worry about my kids. I'm just going to try my hardest not to worry any more about Felix than I do about my other kids. I believe Felix will be able to do anything he sets his mind to. I can't wait to see him working in a job he enjoys, watching movies with his friends, and bringing home someone he's fallen in love with. I'm even looking forward to the day he steals a sneaky beer from the fridge. For now, though, I'll enjoy my bouncy little boy who just looked at me through his mop of long hair and said, "You're so funny Mum!" Love that kid!
Posted by Felix's Mum at 03:21