Thursday, 31 May 2012

Two-word sentences!

Signing "Asleep"
Felix woke bright and early as usual this morning. When he came into our room for cuddles, he noticed one of our dogs still asleep on the floor. Straight away he looked at me with big eyes and signed, "Dog, Asleep". His first two word sentence!! To say I was proud of him is a huge understatement. I was so excited! It's wonderful when he signs new words, but to be able to put two of them together to explain something to me was huge. It makes me cry just thinking about it.

Just when I thought things couldn't get any better, he put two more words together in the afternoon. He was signing "More" and so I asked him, "More what, Felix?" He then signed "More, Eat". He then beamed a huge smile when I went and got him a snack. He looked so satisfied that I had understood what he was telling me and he had got what he asked for. Isn't communication wonderful? I'm learning more and more that communication is so much more than just the spoken word.

In the last couple of days Felix has also learnt to point. A simple skill for most 'typical' children, one that is usually grasped well within the first year of life. It's something which has taken Felix a little bit longer. Until now, he has pressed buttons on toys with his thumb, or pointed out of the window with his whole hand. He has finally mastered the ability to point at things with his finger fully extended. I think he's quite pleased with his new skill too because he spent a lot of today getting our attention and then pointing to different things.

Felix and his buddy, Jacob
Felix had his little buddy, Jacob, come to visit today. Jacob is 4 months younger than Felix and also has Down Syndrome. They don't get to see each other much anymore since the time for our Playgroup has changed, so it was nice for them to have a play. It's exciting to see that Jacob can now sit himself up from laying on his tummy, and he get up on all fours in the crawling position as well. It won't be long until he's chasing Felix around. Jacob and Felix played so well. Felix held out the ball to him and said, "Ah" (Ta) and gave Jacob the ball. Then Jacob would lean towards Felix and give the ball back. They passed the ball back and forward to each other for a while. It was very special to watch our boys sharing so well, and learning through their play.

I'd like to wish our gorgeous son, Isaiah, a very happy 14th birthday today. Isaiah reads my blog every day and is such a strong supporter of Felix and others with Down Syndrome. He is such a wonderful big brother to Felix. We are so proud of you mate and love you so very much x x x

Wednesday, 30 May 2012

Terrible Two's already?

How could you tell him off with a face like that?
Look where I found him
sitting today!
Somebody must have told Felix that he turns 2 in September. I can see the 'terrible two's' quickly sneaking up on us. Felix is starting to test the boundaries of what he is and isn't allowed to do and eagerly awaits our reaction to his latest trick. Today he was sitting in his high chair at lunch time with his cup in front of him. I was in the kitchen (right next to his high chair) preparing his food. He looked at me while he held his cup out over the edge of the high chair. I said, "Don't you throw that on the floor". He smiled at me and then dropped it. The cup hit the floor and the lid came off spilling his juice everywhere. When I gave him his lunch, I gave him a different cup with a screw top (hoping the lid would stay on if he threw it again). What did Felix do? Exactly the same thing. A smile and then he dropped the cup again. Unfortunately for me, the lid still came off the second cup, so I had to clean up a second lot of juice. Felix looked quite pleased with himself.

Kindergym Fun
It still boggles my mind that when we received Felix's diagnosis, the Doctor who 'counselled' us gave us the impression that Felix wouldn't be much more than a shell of a person, incapable of much at all. I would love to take Felix to see that Doctor now!  Here is Felix; an adorable, cheeky, clever, mischievous and sometimes quite manipulative toddler, the same as all the other kids his age. He isn't as advanced in his speech or his dexterity, but he's got it all going on upstairs!! People with Down Syndrome don't get enough credit for their ability to understand what's going on around them. Just because it sometimes takes a little longer to process information, it doesn't mean they don't get it. Felix knew exactly what he was doing today. He knew even before he did it that he would get a reaction if he dropped his cup on the floor.

Felix kept me so busy today. He managed to climb onto the top of the coffee table and was turning his brother's Xbox on and off, quite enjoying the beeping noise it made. He also found the remote for their TV and turned that on. He pulled everything out of one of the drawers in the kitchen while I was getting dinner and opened one of the cupboards because the child lock hadn't been put back on properly. He moves so quickly these days that I have to have eyes in the back of my head to make sure he's not getting into things he shouldn't.

Playtime
Yesterday we went to Kindergym for the second time. Felix absolutely loves it. He was a bit more confident this time and wandered away from me more than he did the first time. Kindergym is the perfect place for him to practice standing because of the nice, soft floor. He thinks it's hilarious when he stands for a few seconds because everyone around him claps and gets really excited so he does it over and over again, laughing his head off. He loves being in the spotlight! I'd love to see him interacting more with the other kids his age. He seems a little bit frightened by other little ones, especially if they squeal or rush towards him quickly. He is much more comfortable if he is the one that approaches them. Hopefully over time, in the noisy Kindergym environment, he will get used to it and grow to enjoy hanging out with the other kids.

I am looking forward to this new phase in Felix's life. Although he is starting to challenge us a bit with his boundaries, it is exciting to see. It confirms to me just how clever he really is and how much he comprehends. He is learning to follow instructions and to work out for himself what behaviours make Mummy and Daddy happy, and which ones don't. He never ceases to amaze us.....

Monday, 28 May 2012

Sleepyhead

video

I had to post this video. I can't get enough of Felix's giggles!
I love when the kids interact with him like this. It makes me so proud of them and everything they have taught Felix. They really love him to bits x x x

This morning Felix woke up at 5am, so by the time it was time to go to his Special Needs Playgroup at 9.30am he was well and truly ready for his morning sleep. He started waving at me which is what he does when he's saying goodnight and wants to go to bed. I really don't like him missing Monday playgroup so I took him anyway, hoping he'd be a bit happier by the time we got there.
So sleepy
He's such a funny little guy. We walked into playgroup and he started waving at everyone and put his head on my shoulder. It was definitely a, 'yep, OK, we came to playgroup, now please take me home so I can sleep'. What a mean Mum I am! Once I put him down on the floor to play he was much happier though. He sat and played with some plastic animals and made pig noises (his favourite at the moment). He had lots of smiles and wandered off from me a little bit. Then came Sophie......

The beautiful Miss Sophie is Felix's little friend at playgroup who also has Down Syndrome, and has just had her third birthday. Sophie loves Felix and really, really, really wants to cuddle him. The problem is, Felix really doesn't want to be cuddled. Poor Sophie, as soon as she gets close to Felix he pushes her away and looks very unimpressed. She tried hard a couple of times to sit next to him this morning and in the end he burst into tears. Not enough sleep and too much female attention was enough to set him over the edge. Little Sophie's bottom lip dropped and she looked so worried about him. Her concern was so sweet. The good news is that after his little cry he actually crawled over towards Sophie and started playing right next to her.

Earlier in the year when Felix actually let Sophie cuddle him


Felix lasted for an hour at playgroup and then lay face down on the floor. I picked him up and took him over to the table for fruit time, but when he picked up his banana and threw it on the floor and started waving at everyone again, I realised that I should probably take him home to bed. He gave everyone a cheeky smile as we were leaving; he was getting his wish and being taken home to bed.  The second his head touched the mattress in his cot, he fell asleep. It had been a very early start to the day. He did well to stay awake for as long as what he did.




Sunday, 27 May 2012

Swimming Success

Can't get enough of this smile 
Swimming
Well, Saturday morning was Felix's very first swimming lesson. It started off as a bit of a disaster because he really did not like the swimming nappy I put on him. I think it was another one of his sensory issues, so hopefully his reaction will improve over time. He was so upset over the nappy that he didn't want me to put his wetsuit on either. (I had already decided that we need to practice a bit with the earplugs and headband. He pulls the headband off every time I put it on his head, so if he does that in the pool, the clear plastic earplugs will sink to the bottom of the pool, never to be seen again). It was a bit of a struggle and a wrestle, but after a few minutes I finally got the wetsuit on and he was ready to go. I was hoping the bad start wasn't a sign of things to come.

Felix loves climbing in the toybox
Felix was really happy once we got to the pool. He didn't know where to look first. There were so many new things to see. There were a lot of parents and grandparents sitting around the edge of the pool so Felix crawled over and introduced himself to a few people while we waited for his class to start. I sat there mortified because I had worn bathers (swimsuit) as I had to get into the pool with Felix; and looking around I had noticed that all of the Mums in the pool were wearing board shorts and rash vests! As soon as I got home I ordered some board shorts from Ebay... I felt a little conspicuous!

The pool was a little bit chilly when we first got in; Felix shivered for the first couple of minutes so I kept him moving in the water to warm up. The class ran for half and hour, which was perfect timing because Felix's lips were turning blue by the end. The class was fun for him because there was a lot of singing and actions to the songs. I poured water over his head; we splashed our hands and Felix kicked his feet. He didn't mind gliding through the water on his tummy but he hated being turned on his back. (He doesn't like it when I lay him back in the bath to rinse the shampoo from his hair either). He was a bit better on his back if his head was rested on my shoulder, so we'll work on that and see how he goes. It was a fun morning and I'm looking forward to watching his confidence grow in the water.

And climbing in the drawers
New tricks
Climbing is Felix's favourite thing to do at the moment. If he's not pulling out the drawers and climbing inside them, he will be sitting in the top of his toybox or climbing his playground when we forget to put the steps away. He is getting much more adept at climbing down from things very carefully but, of course, with climbing comes falling. He hasn't worked out yet that climbing the toybox when it is full and heavy is easy because it won't tip over. When all the toys have been thrown onto the floor and the toybox is empty, it is too light and tips very easily. There was a crash, a pause and then some loud crying this morning when Felix learnt that one the hard way. It didn't slow him down though. He was back in action shortly after the shock had worn off.

I was excited the other day because Felix had stood himself up and then stayed standing for about ten seconds. This afternoon he stood for 25 seconds without holding onto anything (Isaiah was counting!) He is consistently trying to stand all the time now and thinks it's the best thing when he stands for a few seconds and everybody claps. His eyes widen and he applauds himself. It really is the cutest thing!!

Just waking up and peeking out of the cot
Verbal speech isn't really Felix's forte just yet, but today he made some speech sounds which made me pretty excited. Every time we handed him something and said, 'Ta', he would respond with a definite 'Ah' sound. Tonight when he had his dinner, he occasionally held out his fork to us and said, 'Ah' because he wanted us to share with him. I am a very proud Mummy!  I'm sure the day will come when I'll be saying to Felix, "Would you please stop talking", but for now I'm encouraging all of his attempts to speak to us and looking forward to what sounds he will make next. Since having Felix I always go to bed excited about what tomorrow will bring.

Friday, 25 May 2012

Tears for a new friend

In memory of our precious angel, Eden.
She would be turning 8 years old this year
I heard some sad news today. The lady I have been speaking to (who was pregnant with a little one with Down Syndrome) just went for an Ultrasound but they were unable to find a heartbeat. She had just embraced her decision to continue her pregnancy even though it meant she was about to embark on a journey she hadn't planned on taking. Sadly, it was not meant to be. Her little girl was obviously too beautiful for this world. As devastating as this news is, I am so thankful that she had made the decision to have her baby even though the diagnosis of Down Syndrome had been such a shock. This precious little girl was loved and very much wanted.

Felix -All the more special
Reading this sad news today reminded me of the day in August 2004 when I went for my Morphology scan (I was 19 weeks and 3 days pregnant). For 3 days I felt like something wasn't quite right. I hadn't felt the baby move much and when I walked into the room to have my Ultrasound, I actually said to the Sonographer, "I think my baby has died." Within seconds my worst fears were realised. There, on the little TV screen was a perfect little baby, curled up tightly and looking so sweet but without a heartbeat. I wanted the world to stop, but it didn't. I was induced later that night, and after a 7 hour labor I delivered my tiny little girl, Eden Grace.

I can honestly say that a lot of things in my life changed that day. After the clouds lifted (which took months). I knew that if I could survive burying my baby, I could get through anything. Having Eden gave me a new appreciation for the children I already had and I felt much stronger and able to cope with life than ever before. I realised more than ever the frailty of life and how precious it really is. I still grieve for Eden; I cry for her and think of her every day, but looking back now I can see that losing Eden made having Felix even more special. When we were told that they suspected Felix had Down Syndrome it was a relief! I was 19 weeks and 3 days pregnant (exactly the same as the day I found out Eden had died). I had been a nervous wreck all morning because of the irony of the timing of my scan. To be told Felix had Down Syndrome was great news. He was alive, he was healthy and he moved so much it felt like he was trying to break out. What a blessing!

Perfection!
Today I celebrate life because it is so fragile. I have friends, who even today, have had to put their children into the hands of surgeons. There are many waiting for life saving heart surgery. One little boy is slowly recovering from leukemia. There are also the happy stories. The friend I mentioned in a previous blog, who has gone through a long adoption process to save a little girl from an adult institution in Eastern Europe, finally has her new daughter home in a warm, loving family.

Hug those you love tightly today. Tell them you love them. Cry for those you've lost; but cherish those you still have. I'm so thankful for Eden. She taught me to love more deeply than I ever had before. As hard as it was to lose her, I am so glad I had her. I only got to hold her in my arms for a day, but she will live on in my heart forever.

Remembering all of our angels x x x




Thursday, 24 May 2012

Book Review

Fun with one of his big brothers, Isaiah
Sadly, my Mum had to leave to go home today. It has been such a wonderful few days having her here to visit us. I'm glad she got the opportunity to catch up on all the new things Felix has learned to do since she saw him last, and it was extra special because she got to witness him doing some things for the very first time. She's such a hands on Mum and Granny and I appreciate not only her practical support; cooking, doing dishes and playing with the kids, but also the fun we can have with her. We are very blessed to have her and make the most of the time we get together.

'Gifts'
Some great reading

At our 19 week Morphology  scan we were told that there were some 'hard markers' which indicated Felix had Down Syndrome. One was my age (39 years old) coupled with the fact that Felix had no nasal bone (something which in recent years has become recognised as a strong indicator for Down Syndrome). He also had very short femur bones (he is still a bit of a shorty!)  We chose not to have an Amnio because we didn't want to risk a miscarriage and the results didn't matter to us, but we decided that because we had the unique opportunity to learn about Down Syndrome and prepare for Felix's birth we would start reading as much as we could.

'Babies with DS: A New
Parent's Guide'
These are the first four books we ever bought and I would highly recommend them:

The first one is called 'Gifts'. It is the most beautiful book of short stories from Mothers of children with Down Syndrome. All of the stories are inspirational and honest. It is very easy to read and you could read it cover to cover in a day, or just read one story at a time. I can guarantee you will feel inspired and will probably have a tear or two in your eye if you read this book. If I could, I would give a copy to everyone I know. It really is beautiful. Since then I have bought 'Gifts 2' which is also a great read, so if you like the first one then make sure you read the second.

'Babies with Down Syndrome: A New Parent's Guide' was the perfect first book of information on Down Syndrome for us. It covered all the basic information about the different kinds of Down Syndrome, health issues and what to expect when raising a baby with Down Syndrome. We gave it to the kids to have a read through and my parents read it from cover to cover as well. If you know of anyone who is expecting a baby with Down Syndrome or has recently given birth, it would be a perfect book for them to read.

Motor Skills
Early Intervention is SO important for children with Down Syndrome. The earlier potential developmental problems are addressed, the better it is for your child. We wanted to give Felix the best start in life so we bought 'Gross Motor Skills in Children with Down Syndrome' even before he was born. It has some really good information which can even be used with newborns (Eg. The importance of keeping your baby's legs together, hints to help your baby learn to roll etc)

'Fasten Your Seatbelt'
The final book we bought when I was pregnant with Felix was 'Fasten Your Seatbelt'. This book is really unique because it was written specifically for siblings of children with Down Syndrome. The book was compiled from actual questions asked at a seminar held for siblings. The kids were asked to write an anonymous question and put it in a box. After the questions had been written they were discussed one by one at the seminar. Some of the questions and answers were then used to put together this book. We found it to be a good tool to initiate conversations with our kids before Felix was born, and was a prompt for them to ask any additional questions they had as well.

I have just ordered a new book, 'Down Syndrome Parenting 101'.  It got some really good reviews and seems to be a little bit different to other books I have read, so I'm looking forward to having a read. You can buy any of these books from www.bookdepository.com       I'm pretty sure they have free delivery to most countries and their prices are usually comparable to other places.  If you enjoy reading, definitely check some of these books out. Happy reading!

Wednesday, 23 May 2012

Kindergym

Yay, I'm learning to stand!
I've still been feeling a bit sad about Playgroup changing times and wondering what I could do with Felix to give him some interaction with other kids his age. Today I found the solution! Mum and I took Felix to Kindergym for the first time this morning. It's held in a local gymnasium and is set up beautifully for little ones. Everything is on a big padded floor so it's safe and there are soft places to fall. There are tunnels and ladders; there are lots of things to climb on and climb inside of. It's a toddler paradise, and Felix definitely thought so!

Sometimes when there are a lot of people around, Felix can be a little bit wary and stay close to me. Today I was really excited because the second I put him onto the floor he took off on his new adventure. It was great to see him wandering away from me a bit and not being frightened to try new things. He had the opportunity today to experience lots of different things in a completely different environment and he really thrived which warmed my heart. 

video
Fun at Kindergym this morning

One particularly good thing about today was how welcoming all the other Mums were. The lady who runs the Kindergym made a huge fuss of Felix when we arrived. She had seen his photo in the local paper a couple of times and joked about him being a bit of a celebrity. Everyone was so friendly and I felt really comfortable there so we'll definitely be making it a regular thing. I'm looking forward to getting to know a new group of Mums as well as renewing friendships with some familiar faces I know from Playgroup as well.

Felix was sound asleep in the car before we even got home from Kindergym today. He was absolutely exhausted from all of his exercise. He slept for two hours and when he woke up he ate an enormous lunch and then kept signing for more food all afternoon. I don't think I've ever seen him sign 'more' or 'banana' that much ever before; he was one very hungry boy. He ate a huge dinner tonight and was well and truly ready for bed after he'd finished eating. 
Singing with Granny

I finally got around to booking swimming lessons for Felix today. He starts this coming Saturday morning. I'll have to have a play around with his earplugs between now and then to make sure they fit him properly, and hope like crazy that he will actually keep them in his ears. The lady I spoke to on the phone about his lessons was really helpful. I mentioned that he has Down Syndrome; not because it will affect his ability to learn to swim, but because sometimes people react with surprise when they meet him if they don't know beforehand. I was really pleased when she told me that all of the instructors at the pool work with  kids from the 'Special School' when they come for swimming lessons, so they are used to teaching kids with differing abilities. That made me feel a lot more comfortable because when you have a child with Down Syndrome all you want is for them to be treated the same as everyone else. I'm confident that Felix will have a great experience learning to swim.

Tuesday, 22 May 2012

So much to tell

4 Generations!
Lots has been happening around here since the weekend. My Mum has travelled up to stay with us for a few days which has been wonderful. Nathan and I have really enjoyed spending time with her and catching up, and it's been so nice to have cups of tea made for us and have her spoil us a bit. The kids love having their Granny here and it's been fun to watch her meet Noah, her Great-Grandson, for the first time too. Felix has enjoyed having some special attention when the other kids have been at school. There's nothing like a Granny who just sits and reads stories, sings and plays outside and you have her undivided attention. Felix has made the most of it. We're all going to miss her when she goes home.
Climbing in and out

Yesterday Felix had a HUGE first. I was sitting outside with him while he was playing in his sandpit. He spent some time climbing in and out of it and I was amazed at how agile he is getting and how quickly he can do it now with no help from me at all. Then something fantastic happened. He was sitting on the front porch when he suddenly stood straight up from squatting without pulling himself up on anything and stood there for ten seconds. He then calmly sat back down again like he's been doing it for months. I couldn't believe my eyes. I think I held my breath the entire time. When he sat back down I cheered and clapped my hands and he excitedly copied me.

Practising standing
For the rest of the afternoon when one of us asked Felix to stand up, he would try really, really hard. He managed to get one foot forward ready to stand and put his arms up high and pushed up with all his might. He was grunting and groaning. It was so awesome to see his persistence and determination to do it again. I was also impressed that he knew exactly what we were asking him to do. His comprehension just gets better and better. He didn't manage to get all the way up again, but I don't think it will be too much longer before he's able to do it consistently. What a guy!

Standing for a second or two
(A bit blurry-I was too excited!)
The Speech Pathologist and Occupational Therapist visited Felix at our place today. It was good to be able to brag to them about all the new things Felix has learnt since they saw him last. They were really impressed with his signing, particularly as he doesn't need prompts all the time, but will sign the appropriate word when he hears it. He showed off his pig sound which is his favourite at the moment. He played with some blocks and put them in the container when he was asked, and he enjoyed interacting with some puzzles which made noises when the correct piece was put in the right place. My Mum enjoyed being there to see what happens in some of Felix's therapy sessions and made sure she had a brag about all the clever things he can do too.

Those who regularly read my blog will know about a lady I have been speaking to who is pregnant with a baby with Down Syndrome. She has struggled over the past couple of weeks with the decision of whether or not to continue her pregnancy. I am over the moon to tell you that I got an email today and she is definitely continuing her pregnancy!!! To her, I would like to publicly welcome her to our beautiful, big family. A Community of people who love someone with Down Syndrome, and whose lives have been enriched and enhanced by them. You are about to embark on a wonderful journey. There are many who have travelled the road you are about to walk down and there will always be someone beside you. You will never be alone. Big hugs to you... I'm so happy for you!

So much to be proud of this week. You're such a clever little man!


Saturday, 19 May 2012

Signing Fun

Sign language has become a part of life for our family since Felix has been born. I know I've written about it before in my blog, but I think it's so important, I wanted to mention it again.

You can't get more Australian than having
Vegemite all around your mouth!
I am so thankful we decided to learn sign language when we knew Felix was going to be born with Down Syndrome. We are starting to reap the rewards as Felix is able to make himself understood so much now even though he can't speak verbally. We are using 'key sign' which means that we only sign the key words in a sentence, not every single word like we would if Felix was unable to hear. For example, if I say to Felix, "Let's go and pick up your brothers from school", I will only sign the words 'brothers' and 'school'. We try teach ourselves a few new words every week and we choose the words around things which are relevant to Felix at the time. He has played in the sand a bit this week, so we have learnt the words, 'bucket', 'spade' and 'sand'. By regularly using the signs, as well as the spoken word, Felix is gradually picking up on the signs over time. This morning when we were out shopping I said to Felix, "We're nearly finished" (but I forgot to sign 'finished'). Straight away Felix started to sign the word 'Finished'.

video

Here's a quick video of Felix doing some signing.

When I speak to people about teaching Felix to sign, there are some who are skeptical about it. Years ago there was a belief that if you taught a 'hearing' child how to sign, it would make them lazy and as a result, they would refuse to verbalise words they knew a sign for. In recent years there is evidence to suggest quite the opposite. It has become more popular (even with parents of children who have no disability), to teach their children to sign. Teaching a child to sign actually encourages earlier speech patterns and children who learn to sign will often speak sooner than those who don't sign. What usually happens is that once a child learns to speak a word, they will then stop using the sign for that word.

Using sign language for children with Down Syndrome can help in different ways. The biggest reason why we decided to use sign language with Felix was to eliminate a certain amount of frustration. Children with Down Syndrome are generally slower to speak than other kids and the degree to which they will be able to speak, verbally, varies from person to person and is not something you can predict when the child is born. We don't know how 'verbal' Felix will be, so it's really important to us as a family for Felix to be able to express to us what he wants and how he feels. Imagine how difficult it would be if you were hungry, but were unable to express that to the person who cared for you. Even worse, if you were feeling sad or in pain but noone knew. I'm really hoping that Felix will be able to speak clearly when he's older, but if he can't (which is OK too), then at least we have something in place to help us all be able to communicate with each other. In the meantime, it's brilliant for him to be able to tell us what he wants!

Some children with Down Syndrome have varying degrees of hearing loss. Some is able to be corrected by tubes or grommets in the ears, and some people wear hearing aids. Others have significant hearing loss which is unable to be corrected. In these situations, sign language becomes even more important. I would strongly encourage it anyway as the future is unpredictable. Besides, it's a fun thing to learn and the whole family can get involved. Here in Australia we use Auslan sign language. If anyone is interested in learning, this website is fantastic http://sign.com.au/   Click on where it says 'Create Custom Phrase' and type in any word you'd like to learn. A diagram will come up showing you how to sign it. Give it a go :)

One of Felix's first signs was 'Cat'
Felix will sometimes make up his own signs for things even though we sign it the correct way to him. At the moment, when he wants a drink he will tap his thumb against his chest (similar to the sign for 'more' but just with his thumb). The main thing is that you understand what your child is saying. It doesn't matter if they don't get it exactly right as long as the two of you know what is being said. We are so proud of Felix and thankful for everything he is able to communicate to us through sign. He's an amazing little guy!





Friday, 18 May 2012

A little bit sick :(

Rosy cheeks and snotty nose
but still gorgeous!
Wow! What a shock to the system. Felix woke up last night for the first time in about 6 months. He was miserable with a bit of a temperature and a runny nose. I cuddled him in his room for a few minutes then put him back in his cot. He wasn't too happy about that and dropped his lip and looked so sad. When I went to leave the room he started to cry and held his arms out to me, opening and closing his fists. It was so sweet but he was really upset, so I picked him up and brought him into our bed. He went and lay on Nathan's shoulder and started stroking him. He really loves his Daddy, but he's usually up getting ready for work when Felix wakes up in the morning so he enjoyed his snuggles. After about half an hour he settled enough for me to put him in his cot and he went back to sleep (It was 3.30am). I'm loving being an older and more experienced Mum this time around, but getting up in the middle of the night is so much harder than it was in my 20's!!

Not sick enough to
leave Mums phone alone
We've been so lucky with Felix healthwise. At 19 months of age he has only ever had a couple of colds and not much else. Kids with Down Syndrome are a lot more prone to things like ear infections and other complications from colds, so I always take extra care if Felix gets sick. I swear by the vaporiser we have going in his room every single night. Since we've had one, Felix rarely ever wakes up stuffy in the mornings anymore whereas he used to always have a blocked nose.  I'm wondering if these symptoms are as a result of the Chicken Pox vaccine he had recently. I remember the nurse telling me that there will be side effects for more than 3 weeks after it, including temperatures of 39+ which he has at the moment. Hopefully that's all it is and he will be back to his healthy self in no time.

During the day today, Felix still looked super cute with his rosy red cheeks and runny nose. He was a bit quieter than usual, but still managed to get into lots of mischief. He emptied Daddy's underwear drawer (again) and at one stage had 3 pairs of jocks around his neck at once. In the kitchen, he usually pulls the tea towels out of the bottom drawer, unfolding them all as he goes (such a helper). Today, he realised he has enough balance to stand and open the drawers higher up and pull everything out. I was tidying out some cupboards so I didn't mind as it kept him occupied so I could get my job done (and I did admire how clever he was being), but I had quite a task of re-rolling the aluminium foil and picking up dozens of freezer bags and twist ties when I was finished.


video


When Nathan got home today I was showing him some videos I had taken of Felix which I had uploaded to the computer. Felix was quite happy to watch at first, and even laughed at himself. However, once a video came on of him making noise, he freaked out. It was so funny; the poor kid looked terrified. He climbed up high on Nathan's shoulder and was too frightened to look at the screen anymore. I'm not quite sure why it scared him, but he has always got a bit worried if another baby has cried or made any loud noises so maybe he associated this strange kid on the video as someone else. We tried to get him to watch another one, but he wouldn't have any of it!

Still Smiling
A while ago I mentioned that Felix had been really scared when he saw a new shower loofah I had bought. Actually...no....he looked terrified! The lady who runs the Special Needs Playgroup suggested I buy a couple of them and put them in his toybox, so that he could find them and interact with them at his own pace. I'm pleased to report that I did that and he is perfectly fine with them now. He will even play games with them and throw them around which is fantastic progress. I don't think I'll ever know why they frightened him in the first place, but I'll definitely try the same thing with other objects he has sensory issues with. Maybe I'll attempt to show him the videos of himself again sometime too.

Thursday, 17 May 2012

Wonderful news!

Fun in the sand
Thursdays are usually Playgroup day for Felix and I, but the starting time has changed and unfortunately it now falls right when Felix has his sleep. I was a little bit teary when I found out we wouldn't be able to make it any more. As I have written in previous posts, the Mums there have been an amazing support to both Felix and myself. The week they all decided to theme Playgroup around World Down Syndrome Day meant so much to me. It's not easy as an older Mum to find a group of young women who are so accepting; and to find a group who not only accept an older Mum but also one with a child with a disability is wonderful. I'm going to miss them. Hopefully I'll be able to find another afternoon Playgroup with Mums who are just as lovely!

Brushing off the sand 
I knew we wouldn't be going to Playgroup today so I wanted to have a special morning with Felix. Last weekend Nathan and I finally got some sand for Felix's sand pit. The sun was shining early today so I thought it would be a good time for Felix to check it out. He loved it! Watching Felix play and learn is still one of my most favourite things to do. He sat and let the sand run through his fingers, and giggled when I sprinkled it over his toes. He concentrated on using the spade to scoop sand into the bucket and when he found bits of sand that were still in a big chunk, he picked them up and squashed them. Of course he had to taste the sand which he crunched between his teeth. It sounded dreadful, but it is just one of the ways Felix introduces himself to different sensory experiences. He stuck out his tongue and tried to wipe some sand off, but quickly went back to crunching away.
So thoughtful

After a play in the sand, Felix came inside and ventured closer to little Noah than he ever has before. Noah was laying on the floor near Felix's toys. Felix laughed and smiled as he touched him which was beautiful. He pulled off Noah's socks and then tried really hard to put them back on him again. After a while, Noah started to cry a little bit so I picked him up and started patting him on the bottom. Felix came over straight away and said, "Ahhhh" and then he began to pat Noah as well. My heart melted; it was so sweet!

Yesterday I had the best news.....

Felix was happy with the news too :)
What I really wanted to share today relates to something I posted a few days ago. Remember the lady who contacted me because she had been given a pre-natal diagnosis of Down Syndrome? She asked for some more information about Down Syndrome, but was leaning towards termination? I didn't expect to hear from her again and grieved for her baby; but also felt sorrow that she would never know the indescribable joy of raising a child with Down Syndrome. She emailed me again yesterday, and then I spoke to her on the phone. I literally cried tears of joy when I heard her say that she felt more and more every day that she wanted to have and raise her baby. She still hasn't made a definite decision, but I am hopeful that the little life growing in her womb is going to have the opportunity to bring her a love and a delight like one she has never known. My conversation with her was the highlight of my day!

Tuesday, 15 May 2012

The Little Things

Walking with just one hand held
Thanks to some wonderful messages of support and love from some special people, I am feeling so much better and back to my positive self today! I had a surprise visit from our eldest son yesterday who dropped by and had lunch with me, and I found out this morning that my Mum is planning a trip to come and spend a few days here next week. It's good to have reminders from time to time of all that is good in your life. I think I have been missing my parents a lot lately, so a visit from Mum will be just what the Doctor ordered. I'm looking forward to it!

I have also put some thought into doing some more study. Felix's arrival in our lives has put us on a different path than the one we were on before. I am passionate about being supportive to Felix and others whose lives are impacted by disability. I'm thinking about doing Disability Studies to become more informed and educated to help my own son more, but possibly to work with others with disabilities in the future. It's still very much in the 'thought process' stage at the moment, but I'm excited about the possibility.

Problem solving- Climbing down
Today I really want to focus on celebrating all the little things again. I have always been thankful that I haven't compared Felix's milestones to other 'regular' children, or even to other children with Down Syndrome. This past week, probably due to feeling a bit down, I found myself doing the one thing I have always tried not to do. I noticed when people with children the same age as Felix said that their child was starting to speak in sentences; or saw photos of them riding a little bike. A friend I have on Facebook posted a video of her son (who has Down Syndrome and is 6 months younger than Felix), saying some words. Other parents of children with Down Syndrome proudly gushed that their children were walking at 14 months old or standing unassisted. I was genuinely happy for all of these parents, but had let it bother me. It is SO exciting when our kids do something new and I think every parent should 'shout it from the rooftops' whether their kids have a disability or not. Milestones should be celebrated!

Where's Felix?
I looked at my gorgeous little Felix this morning and realised how silly I had been. I went to the bank earlier and he had every person there gushing over him as he sat and waved and smiled at them. He blew kisses and gave high fives. He is an incredibly clever little man and people are drawn to him. Yesterday he stood for a full 4 seconds on his own. This morning he climbed up inside the folded pram and got stuck, but kept trying until he was able to get himself out again. He is signing the words 'drink', 'finished' and 'bath' more and more. It's all about the little things, and I had foolishly let myself forget that.

video
Excuse the video being sideways - Couldn't work out how to turn it!

My encouragement to you is to celebrate every little 'first'. Whether your child has a disability or not, cherish that moment because a first is exactly that - a first; it will never happen again. This morning my 3 week old Grandson smiled for the first time, not just once but several times. What a beautiful moment. The look on my son's face when he saw his son smile was priceless. It was like two firsts in one :)  

Monday, 14 May 2012

Not the end of the World

His scratch is healing well
Ever have a time when you are surrounded by people who love you and care for you, but you feel a bit alone? I've been feeling like that at times lately. Since we moved to the country 6 years ago, we have had some of the best times of our life. The lifestyle here is fantastic; it's very easy going and a lot slower paced than the city. Nathan is only 5 minutes from work and we are close enough to walk pretty much everywhere. Since having Felix, however, there are times when I feel a bit isolated. 

I am so thankful for the support I receive from the online Down Syndrome Community and the frequent calls and follow up from the Down Syndrome Society. These have been invaluable to me and I feel so lucky to have that support and will never take it for granted. What I would love, however, is more face to face contact with other Mums with kids with Down Syndrome. When we were in the city earlier in the year, I took Felix to a session at the DS Society and met a group of women who I know I will be friends with for life! We caught up again a couple of months ago and it was just fantastic! Not only do they all have a child the same age as Felix with Down Syndrome, but they are all about the same age as me and most have other children. It's hard when I get invited to different get togethers and events for our kids, but am unable to attend because of distance.
Being a comedian as usual
Don't get me wrong. I am so thankful for all the beautiful Mums here, especially those I've met at Playgroup. They have included me and all treat Felix just like the other kids, which is wonderful. Inclusion is something I always want for Felix. I don't want him to just have friends with Down Syndrome, but I also acknowledge that the gap between him and other kids his age will get bigger as he grows and his friends with Down Syndrome will become more and more important as he gets older. Every now and then at Playgroup, it's hard not to feel like I'm a hundred  years old when all the other Mums are in their twenties and enjoying their first child (and I'm 41, with 8 kids and a Grandchild!)! Just like those who like netball, spend time playing netball with others who like it, or those who like going out dancing get together with others who like dancing; spending time with other Mums who have children with the same disability is something beneficial as we can all relate to each other. 

I'm sure I'll wake up tomorrow feeling positive, but hey, I wouldn't be human if I didn't have a 'down day' every now and again. 

Not the camera again Mum!
Something else that has been playing on my mind over the last week came about because of my blog. I was contacted by someone who is pregnant and her baby has just tested positive for Down Syndrome. She had come across my blog and wanted to know some more information as her and her husband were struggling with the decision of whether to terminate or not. I am not in a position to judge anyone for their decision, no matter what my personal convictions are, and I am thankful that she contacted me and I was able to tell her a bit about what to expect if she continues with her pregnancy and how beautiful our life is with Felix. But I have felt shattered, to be honest. I have cried many times and felt hopeless. I know that the termination rate when someone has a prenatal diagnosis of Down Syndrome is 93%, but this felt so real and I felt powerless to be able to do anything about it. 

I know my friends who have children with Down Syndrome will understand my frustration. I wish so much that everyone who doesn't have a child with Down Syndrome could walk, not a day, but a week or a month in my shoes. Yes, there are days when things aren't easy. I've had a few of them lately, but you know what? I had, and continue to have, days like that with our other kids. What I want people to see is all the sweetness that Felix brings; the laughs and the immeasurable amount of love. I would love people to see the positive changes a child with Down Syndrome brings to the lives of those around them. Finding out you are carrying a child with Down Syndrome is not the end of the world; it just means that the world you lived in is a little bit different than it used to be. 

WELCOME TO HOLLAND

by
Emily Perl Kingsley.
                                         
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
So glad we landed in Holland
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Saturday, 12 May 2012

Happy Mothers Day!

Mothers Day cuddles with Felix
Sometimes as a Mum, it's easy to feel unappreciated when you are buried up to your eyeballs in dirty washing, a mountain of dishes and you've just swept the floor for the third time in a day. You didn't sleep well the night before, but you're still up early in the morning because the food shopping needs to be done and kids need to be taken to school. You sometimes go a long time in between 'Thank You's' and no one ever seems to appreciate they have clean underwear in their drawer or that you've spent all day washing windows. Then you have a morning like I have had today, and you suddenly feel like the most important person in the world. 

Never too big to cuddle Mum
(Aaron, Isaiah, Joshua & Joel)
Our four biggest boys (living at home), brought me breakfast in bed. OK, it was 10am and I was ready to start eating my own foot I was so hungry, but the sleepy foursome along with my gorgeous hubby cooked me an amazing breakfast of pancakes, bacon and eggs and an extra frothy cappuccino. Aaron had made me a card at school and some chocolate goodies which was extra awesome. All four of them piled into bed with me for a snuggle (albeit a squishy one) and told me they loved me. Felix had gone back to bed for his morning sleep by this stage, but he and I had already had a big play earlier in the morning while the 'sleeping beauties' were still snoozing!

I'm a Mum and a Granny this year :)
I have so much to be thankful for. Our 3 oldest kids have become amazing adults and I am so proud of each and every one of them. The next 4 are working hard at school and are getting really good grades. They all have goals for their lives and are striving to be the best they can be. And then there's Felix; our little cherry on the top! If you had told me 5 or 10 years ago that my family would be made complete by a tiny person with Down Syndrome, I would have looked at you like you were mad. How could a child with Down Syndrome make our lives complete? Words escape me... I can't describe how much it means to me that I was chosen to be Felix's Mum. Our family has always been close, but Felix is like the final piece of a beautiful jigsaw puzzle.  I look at it now, with all it's weird and wonderful shapes and it's the most  amazing thing I've ever seen.

My 8 reasons for being thankful I'm a Mum
(Plus 2 lovely girlfriends and 1 gorgeous hubby)
Felix is learning to communicate more and more with each passing day. He still isn't saying words, but he is certainly communicating a lot in other ways. He can sign the word 'finished' and tell us when he wants more to drink. He can sign 'kiss', even though it's not one we sign very often. I'm so pleased that he's obviously remembered it. He will also blow kisses when we say Goodbye to someone. He's walking around the furniture like a professional and has stood a couple more times on his own for a few seconds. He's learning more actions to some of his favourite songs and will 'bow to his partner' in one of the Wiggles songs and cover his face when 'the bear's now asleep'. He still does something new every day!

This Mother's Day I want to say thank you to our kids. You all mean the world to me. I'm so thankful that even though we don't see all of you every day (and you had to grow up and leave home), I think of you all the time and love you more than I could ever say. To my little angel in heaven, Eden Grace, I miss you and will give you extra cuddles in my dreams tonight. x x x x x x x x x

Friday, 11 May 2012

Mr Muscles

Felix (dressed in Daddy's tank top) playing with Mummy
One of the first things Doctors will notice about a baby born with Down Syndrome is a condition called hypotonia, which in simple terms means 'poor muscle tone'. The most obvious thing you notice when you hold a baby with hypotonia is that they are very floppy and their neck and head may need extra support. It can make their joints more prone to dislocation as they are quite loose. Hypotonia can also affect breastfeeding, as the baby doesn't have strong enough muscles to latch on effectively or to suck for a long time; and when introducing solid food, the gag reflex may be affected causing difficulty swallowing which can lead to choking. Hypotonia may also affect speech development because the tongue is a muscle and if it is not working as well as it should be, it can make learning to speak quite difficult. This is one of the reasons why children with Down Syndrome will often learn to speak later than other children.

Having fun pulling everything out of the cupboard and getting patriotic!
Felix was born with hypotonia. I didn't notice it straight away because to me, all newborns feel a bit floppy anyway. It is something which, over time, has become more apparent. At 19 months of age, I notice Felix's hypotonia the most when I lift him out of his car seat or pick him up out of his cot. It is like picking up a large rag doll. As I lift his torso, his head, arms and legs fall back. I'm just glad he's not very heavy because it's like lifting twice the weight. I often call him 'Flopsy' when I have to pick him up! It's a strange thing, because Felix has always supported weight on his legs and is quite strong in some areas, but has muscle weakness in others. It's just one of those things which affects our kids in different ways. 

I am so used to Felix having hypotonia that I don't really notice it much any more and usually forget all about it. Yesterday, however, I picked up my Grandson, Noah, who is 2 weeks old and I couldn't believe the difference. He has such a strong neck and I didn't even need to support his head when I picked him up because he pulled his head and his arms and legs forward when I  lifted him. In some ways, Noah is already much stronger than Felix. Felix will always be much more flexible though.  Hypotonia makes our kids super flexible. Even adults with hypotonia will be able to twist their body into complicated yoga positions with ease, or sit cross-legged for long periods of time. Felix can sleep in the most crazy positions. If Felix and Noah are ever playing hide and seek, Noah will have to look for Felix in all the tiny hiding spots.

Hypotonia doesn't stop Felix from doing much
Despite his hypotonia, Felix amazes us with his strength in other areas. Only the other day he was determined to climb onto one of the benches at our kitchen table. After much grunting and groaning, he managed to get halfway and ended up laying straight across the bench in a 'planking' position. It was so funny! He also has an iron grip. If he has something in his hand and doesn't want to let go (very often my hair) it is almost impossible to get him to release his grip. Hypotonia will always affect Felix in some way throughout his life, but with his sheer determination I'm sure he will work out a way to do all the things he wants to do.