Thursday, 24 October 2013

Medical Student Talk

Great pic of the Simian crease on Felix's palm
What an amazing day!! I was given the opportunity (through Down syndrome SA), to share Felix's story with some Medical students at Flinders University today. There were three other Mums who also spoke, and it was fantastic to hear what they had to say, as all of our stories are a little bit different. Felix was invited to come along as well, and had a great day making lots of new (adult) friends, and meeting another gorgeous 15 year old, who also has Down syndrome.

We were invited to a BBQ prior to the talk, which eased any nerves we might have had. The students were wonderful. They were so welcoming, and made us feel totally relaxed. Felix was in heaven, climbing up and down the University steps. Up and down, up and down, over and over again. My apologies to the very thoughtful students who followed him around. I'm sure several of them will be sleeping very soundly after being put through their paces by a very active 3 year old!! Another mention must go to the guys who carried Felix, and the pram, up and down all of the stairs when we arrived and when we finished. Their assistance was very much appreciated!!
Sprung!! I said "one book" Felix!

I was so proud of Felix today. He was at his charming best, giving everyone 'high fives' or 'fist bumps' as he wandered through the crowd. He is such a people person and was definitely in his element, surrounded by so many adults. He had the spotlight and he made the most of it! I really hope the students could see, by looking at Felix acting like a typical toddler, that having a child with Down syndrome is pretty much the same as having a 'typical' kid. They are busy, active and fun loving, with a bit of a tantrum thrown in for good measure (when I stopped him climbing the stairs for the 50th time!)

I loved sharing Felix's story, and having the opportunity to talk about our good and bad experiences with Medical professionals over the past three years. The students were really responsive and asked lots of great questions. I feel that the future looks bright if these students are going to be the next generation of Medical professionals. They seemed genuinely interested in learning how to approach delivering a Down syndrome diagnosis, as well as caring for a patient who has Down syndrome. Lets hope that over the coming years, we will be telling more and more positive stories about those in the Medical field, and less negative ones.
Bit blurry... Felix and Igglepiggle in the car
on the way home today...they were both tired!

Today was a busy one for both Felix and I. We were in the car, driving to the city by 7am and didn't get home until 7pm tonight. I know I've said it before, but he is SO good in the car! His car DVD player decided to stop working about ten minutes after we left this morning, but he didn't mind. He just sat, looking out of the window, occasionally signing sheep or cow, and making the appropriate noises as we saw them in the paddocks as we drove past. Once we reached the city and had to stop at traffic lights, I would sometimes reach back and grab his leg, making him giggle his head off and sign 'again' (and say "gen"). He's so easily's awesome!! After his long day, he fell asleep twenty minutes after we started driving home, and slept for two hours. It certainly makes the long drives easy when he's so content.

On Saturday, Felix has his first RDA (Riding for the Disabled) lesson. I'm slightly apprehensive. I would like to think that he will sit up on the horse, like a pro, and be completely fearless, but if I'm honest, I think he will probably freak out! I'm hoping to be pleasantly surprised! Watch this space....

Monday, 21 October 2013

Buddy Walk

Fun in the farm barn
I have just got back from taking a walk with Felix, where we almost literally stopped to smell the roses; except instead of roses, they were lavender bushes. I showed Felix how to sniff the lavender flowers and straight away he leaned forward to smell them. There were many more lavender bushes on the way home so, Felix stopped at each one, bent over at the waist and buried his face in the flowers. I love that he was able to identify which bushes were lavender, stopping to smell them, but walked past other flowers. It was beautiful to watch him.

His buddy, the alpaca
This morning I had a super proud moment. Felix was still in his pajamas, but he pulled a pair of jeans out of his drawer and was trying to put them on over his pajama pants. He was getting a little bit frustrated and signed 'help' (and said "elp") to get my attention. I took his pajama pants off and sat and watched him, wondering what he would do. He picked the jeans up again and easily put one leg in (they are very skinny jeans so he had to pull extra hard to get his leg in). Once he had one leg in, he did the same with the other leg, then stood up and pulled his jeans up. I couldn't believe it! The only thing he needed help with was the button. Another little step towards independence!
Big sister, Bekah

Thanks to the advice from another Mum, with an older son with Down syndrome, who said, "The best thing we can do for our kids is make ourselves obsolete", I have been trying to step back with more and more things, and allow Felix to try and do it for himself. Sometimes it's tempting to step in and 'do it faster', but we are certainly reaping the rewards by stepping back and letting Felix attempt them first. When we go out into the backyard, I tell Felix to get his gumboots. He will now sit on the step and correctly put both boots on the right feet. When we come back inside he knows to take his boots off and to go to the sink to wash his hands. I lift him up, and he rubs his hands together to get them nice and soapy, rinses them, shakes them and then goes to the towel to dry them by himself. He is following many more instructions and is showing amazing comprehension, which is really encouraging.
Feeding Shaun some grass

A friend of mine, who is also blessed with a 3 year old who has Down syndrome, recently posted something on Facebook which I found very interesting. Her theory is that it can be really difficult to judge exactly how much our kids understand, because of their speech delay. She thinks (and I agree), that if our kids were able to speak about everything they know, we would actually be shocked at how much knowledge they actually have. Since her daughter has started talking a lot more, she is amazed at the things she knows and understands, which she is now able to express.With Felix's speech improving every day, I'm noticing how much he is bursting to talk to me about. The other day, he was excitedly signing and talking about four very specific animals. After he was finished, Nathan told me that Felix had been playing with a balloon with pictures of those four animals on it. That was what he was trying to tell me! Very often, Felix will look at me and sign 'listen'. I won't be able to hear anything, but then he will sign 'truck' and, sure enough, I will begin to hear a truck coming, in the distance. He notices so many things!
A boy and his sheep

Another thing I am trying to encourage is getting Felix to help me do things. I had to get a prescription from the Chemist yesterday, so I asked Felix if he could go and give the prescription to the lady which he did, with a big smile. I want him to learn to be confident to do things himself, without my help. He likes to help feed the chickens their pellets, and copies me when I pull up a handful of grass to throw to them. We're also insisting all the time that he sign 'please' and 'thank you'. Sometimes he will be grunting at me to do something but I won't until he's signed 'please'. He's pretty good now, and will usually sign 'thank you' without being asked. Our little boy is growing up!
Aaron and Joshua joined us this year

Last Sunday was our annual Down syndrome Buddy Walk. As usual, we had a wonderful day. Felix was confident enough this year to pat the animals in the farm barn (he freaked out last year), and made friends with the biggest animal in the enclosure; an alpaca. He loved the clown (much to Daddy's horror), and had fun on the jumpy castle with his big sister, Bekah. We were able to catch up with a lot of Felix's little buddies, and meet some new faces too. It was a very warm day for the walk, but we're so thankful to our regulars, my Mum and Dad and best friend Deb who mark Buddy Walk on their calendar every year and have never missed one. We are also thankful that three of our kids, Aaron, Joshua and Bekah; our Grandson, Noah's Mummy, Mel; our beautiful friend, Kerri; and the amazing Hartwig family (Andy, Kyle and 5 of their kids) all came out to support Felix, and others with Down syndrome by doing the walk with us this year. We have had so many friends and family come along with us over the past few years, and we're grateful to each and every one of you. Your support means so much; thank you x x x

Wednesday, 16 October 2013

Shaun the Sheep

Happy party boy!
Sunday was a huge breakthrough for us. We had a house full (over 50 adults and kids), here to celebrate Felix's 3rd birthday. Due to absolutely awful weather, all my plans of having the party outside were squashed, and the day was spent rotating inside and out in between the rain. Usually, in that type of situation, Felix wouldn't have coped well at all. He likes to have his own space, and can be quite anxious in a crowded room with lots of little people around. Our house is very small, so it was more crowded than most. He must have know that everyone was there for him, because he took it all in his stride. He laughed and smiled. He interacted, not only with the adults, but with his little friends as well. He even gave some of them kisses and cuddles when they had to go home. Singing 'Happy birthday' was the best bit; he had a beaming smile the whole time as he looked around the room at everyone singing to him. When we had finished singing he clapped his hands and wanted to sing it again.
Birthday cake

A couple of days after Felix turned 3, there was a knock at our front door. One of our local farmers was standing there with a lamb in his arms for Felix. He had even sprayed Felix's name, in blue paint, onto the side of the lamb. We had been talking about getting a lamb to add to our menagerie, for a while, so it was a nice surprise to be given such a special gift. Aaron (13) immediately named him Shaun 'the sheep'. Felix loved the lamb right from the start, and cuddles him and chases him around the yard. The only problem, initially, was that Felix didn't cope with Shaun's extrememly loud bleating. Felix has always had issues with high pitched noises; squealing, screaming, and now, bleating. Thankfully, now that the lamb is a few weeks old and spends the majority of the time outside, Felix has adjusted to it and doesn't get frightened anymore. It's cute to watch Shaun follow Felix around the backyard, or stand next to him when he's playing in the sandpit. Some of Felix's friends, who came for his party, took turns feeding Shaun his bottle. It was fun to watch them experience something new. One of the little boys told his Mum he wanted to live on a "police farm" when he was older too!!
Aaron feeding Shaun his bottle

Playgroup has just started again since the school holidays. The lady who runs it commented on how well Felix is talking since she saw him last. It's encouraging that other people are starting to notice the new words Felix is using. We still have to listen closely, because often he uses just the beginning or end sound in a word, but I am amazed at how quickly his speech is developing now. He is getting especially good at people's names and makes a real effort to try and say most names. The majority of things he signs, he makes an attempt at the sound now, as well. It's very encouraging!
Felix had a lot of friends come to his party. This is a pic of
6 of them...all who have a little something extra :)

Earlier this week, we had to take our car to be serviced. We decided to sit and wait for the car, so I sat on the floor and played with Felix. I found a book with animals in it, and Felix worked his way through the book, perfectly signing every animal. After a while, I noticed a lady watching us. She told me she was a retired Special Education Teacher, and was absolutely amazed at how well Felix could sign. She was also pleased to know that she still remembered some signs from her time teaching. She went on to tell me she had been watching Felix's and my interaction with each other, and was very impressed with his ability to follow instructions and do what he was asked. I felt so proud of Felix. It's great when people acknowledge all the hard work we have put in and, most of all, Felix's hard work and determination.
Sporting a black eye after a bit of a tumble
down some stairs

I'm still finding it difficult to update my blog as often as I used to. If any of you have Facebook, please check out my public page  I post regular little updates about Felix on there, so if you want something to read in between blogs, please look it up! I'll try not to leave it so long between blogs next time!!