Wednesday, 29 May 2013

Grommets #2

Watching the city traffic go past
On Sunday, Felix and I drove to the city to prepare for his surgery early on Monday morning. Thankfully there were no issues with the car, and we made it safely. Felix was thankful to be out of the car and enjoyed exploring our apartment, and looking out the window at the cars and trucks.

Joel, Mel and Noah came for a visit, which was great, but Felix hid in the kitchen from Noah, occasionally peeking around the corner with a smile. Felix was fascinated with Noah's new pair of slippers and, when Noah went into the bedroom for a sleep, Felix sat and tried to put them on his feet. With a little bit of help, he put the slippers on and didn't take them off all afternoon. I have looked everywhere to find slippers that will stay on Felix's feet, and ones he really liked but haven't been able to find any. I was very happy when Joel suggested going to the store, the next day, to buy a pair for Felix. When he saw his new slippers after his surgery, he put them on and didn't take them off even at bed time. He woke up the next morning with very warm toes!
Listening to some tunes before surgery

Monday morning was a very early start but, for once, Felix slept in and I actually had to wake him up. Felix had to fast from dinner time the night before so, with my stomach grumbling, I went without food or a drink as well. I would have felt pretty mean eating in front of him. We arrived at the hospital for the 7am check in and got in line with all the other families. When the Nurse came to go through the details of the surgery with me, she asked if I had accommodation for the night in the city. I had previously asked, over the phone, if I would be able to drive the four hours home after the surgery and they said I could. She told me very quickly that there was no way I would be able to drive with him, and we had to stay within an hour of the hospital until the next morning. Thankfully, I was able to book another night; inconvenient, but safer for the little guy. After that, we had a long wait, Felix wasn't first on the list and didn't get called until 11am.

Felix wasn't too happy when I put on my blue gown, hat and booties to go into theatre with him while he was put to sleep. He kept trying to pull my hat off. After a while I realised that he wanted his own hat, which he proudly managed to put on his head all by himself! We finally got called into theatre and I snuggled Felix on my lap until he went to sleep. The anaesthetist was fantastic! He put the gas mask on Felix's monkey and sock cat because "they both want to have a look at the mask", and then put it close to Felix's face. He then started blowing in and out, which Felix copied, making him go to sleep very quickly (with his eyes wide open).
So sleepy...

I was told the surgery would only take fifteen minutes and, if I was lucky, I might be able to grab a quick coffee. I ran down to the cafe (with Bekah, who was with me all day), and got a coffee and then rushed to the recovery room to wait for Felix. Just like last time, the fifteen minutes passed with no Felix. Other kids started returning who had gone into surgery after him and I started to get a bit anxious. Finally, after an hour and a half, I saw a gurney being pushed through the doors. The back rest was elevated and, perched on the top, on his tummy, was my little man. He looked so cute peeking over the top of the bed, just like he was peering over the edge of a cliff. He was very groggy and didn't want cuddles for a while, he just wanted time to wake up. The surgery went well. They cleaned out his ears, especially the right one which was infected again and full of gunk, and put a new grommet in his right ear. It took a while longer than expected, but most of the delay was waiting for him to wake up from the anaesthetic. It seems Felix is like his Mummy and doesn't like to wake up after surgery.
Just wanting to cuddle my  arm.

I will be taking a break again from writing my blog for a while. There is a lot going on in our lives right now and I need some time to focus on a multitude of different things. Things like Facebook and my blog will be taking a back seat for a while. Make sure you check back in, from time to time, to see if I'm back. Hopefully I'll have lots of new stories to tell by then. Once again, thank you for your overwhelming support, with people reading my blog over 30,500 times in the past 15 months! It's really encouraging, to me, to know there are so many people willing to increase their understanding of what Down syndrome is, or support me while they are walking the same path as me. Stay tuned.....

Saturday, 25 May 2013

Smelling Fresher

Laughing, making his monkey dance
Poor Felix! His room is the coldest in our house and, lately, the temperature has been dropping really low overnight. We always put him to bed wearing so many layers that he can hardly move, and yet he still had icy cold feet when he woke up this morning. It would probably help if he kept his covers on but, he's such a worm and kicks them off. He was extra toasty when I put him to bed tonight; flannel pajamas, two pairs of socks and a onesie over the top. Hopefully his little toes will still be warm tomorrow morning.

As you know, Felix loves his sock cat and his monkey. He loves them so much that he's constantly covering them in kisses. His sock cat gets extra love; he sucks on its' arms and tail, making them incredibly soggy and, over time, quite stinky! Today I decided they both needed a good wash, before Felix takes them with him for his surgery on Monday, so I put them in the washing machine while Felix watched me. He wasn't quite sure what to think as he watched his little buddies swishing around and around, and kept looking at me with a puzzled look on his face. He gave them both extra big snuggles when I got them out of the clothes dryer. They were still warm and smelt beautiful and fresh, so they were extra nice to cuddle on a cold day.
Cuddles with clean sock cat

Felix got a little treat tonight. I was on the computer and noticed someone local was selling a Fisher Price piggy bank toy really cheaply. Felix has often used the same toy during his therapy sessions. It's good to encourage fine motor skills, and it has always been one of his favourites. For some reason, I've never been able to find one in our local shops (we only have one shop that sells toys, so that's probably why!) I quickly got in the car and drove around to pick it up. It looks almost brand new, which is a bonus! Felix was so excited when he saw it, and played with it for 20 minutes without stopping. It even plays the music to Old MacDonald's Farm which, of course, is Felix's theme song at the moment. He sat 'ee, i, ee, i, oh-ing' and snorting his very best pig sound as he put the coins in the top. Definitely a great find!

'Counting' out loud
Tomorrow, Felix and I have to drive back to the city ready for Felix's surgery, bright and early on Monday morning. I'm hoping this trip will be a lot less eventful than the last one! Felix's surgery is to clean all of the wax from his ears (he has so much, it's impossible to see his eardrums), and to check what is happening with his grommets. Our local GP thought Felix's right grommet had fallen out not long after his last surgery but, at our last visit, he thought he could see it but didn't think it was in properly. I guess we will find out on Monday. Felix has had three ear infections in the five months since his last surgery. I really hope things improve because they are such awful things to have. We are so grateful that his hearing doesn't seem to have been affected by his ear infections. Felix regularly signs the word 'hear' when he notices a noise, and often that noise is really quiet, so that's definitely a good sign.

As usual, I feel a bit nervous about holding my baby while he's put to sleep and then handing him over to a stranger, for his surgery. I know it's only something very minor, but it never gets easier. My heart goes out to my friends who have had to endure endless major surgeries on their little ones. They have faced challenges I hope I will never have to. I have so much admiration for their strength and resilience.

Thursday, 23 May 2013

Assessment results

Brotherly love
I don't think I've ever seen a kid more excited to get his hair cut! Previously, Felix has always sat well, providing he didn't have a cape on. Today he couldn't get enough of the cape. He loved it and had lots of laughs and smiles as he watched his hands move underneath it, and lifted it up and down like a parachute. His hairdresser was wonderful with him (having some gorgeous little Grandbabies of her own). She talked to him and played with his ipad. She even got underneath his cape with him, at the end, and had him cracking up laughing. Felix made sure he shared the love with the other hairdressers and made sure they all got a smile and a wave. One even signed 'thank you' as he walked out the door. What a beautiful experience both for him, and for me. Oh...and he looks very handsome and grown up with his new haircut!
Drinking water from the can, like his big

A while back, Felix had an assessment done by the Occupational Therapist. The idea was to see where he was at in terms of his development so we knew what we would need to focus on the most. I have been excitedly waiting for the report, and finally received it today. I have read a lot of stories from other Mum's of kids with Down syndrome (particularly in the US), who have to have these assessments done every year, and get quite upset when they are due to take their children for them. I didn't really understand why they would get upset about it. I mean, isn't it designed to help us with our children's development? How wrong was I! The report was depressing. All it focused on, was what Felix couldn't do. I felt really deflated. I guess I was expecting it to be balanced in some way, stating also, the things he could do well.

I am under no illusions about Felix's abilities. I know he has delays; he always will! I think the frustrating thing is that I wish these assessments could be done by placing cameras in our home for a week, to observe our kids in their home environment, to give a more accurate representation of their abilities. Felix was in a bit of a 'mood' on the day of the assessment. He didn't appreciate having an activity put in front of him, only to have it taken away 2 minutes later and another one put in it's place. He started to get frustrated and started throwing the blocks and toys off the table and onto the floor. He was bored, and wasn't into it at all, so he barely finished any of the 'tests' (I'd like to see any 'typical' two year old be totally cooperative for an hour under those circumstances). The OT has spent a lot of time with Felix and she knows what he is capable of but, unfortunately, the testing required her only to note down the way he performed on the day!
One of the boys!

The results of the testing showed that Felix needs to do lots of activities to strengthen his hands, which we already knew previously. The rest of the results really stated the obvious. He has delays in both his fine and gross motor skills and lacks strength in his upper body. All of these are things we had been working on anyway and, are a given when you have a child with Down syndrome. Will we do the testing again? I don't think so; at least not for a while. It may be a good thing to do before Felix starts school, so that his teachers have a grasp of what he will need help with but, to be honest, I think a letter from his Kindy teacher, giving a balance of what he can do, and what he needs help with, would probably be a lot more useful. I feel like all this assessment says is, "Felix has Down syndrome, so he has delays". I'm pretty sure that we didn't need an 'official' assessment to tell us that. I must note, that Felix's Occupational Therapist is lovely and has been really good with Felix. My view on the testing is in no way a reflection on her, she was only doing the assessment in the way it was designed. I know that if she had to write down her own personal observations, over her time with Felix, it would be a lot more balanced.
New haircut (and some lunch around
his mouth!)

Well...that's my gripe for today. It's one of the frustrations of having a child with a disability. It seems that a lot of time is spent addressing what they can't do. This is a necessity, in one way, because it means we can give them extra help so that one day they are able to do things they once had difficulty with, and when that happens, it is so exciting. On the other hand, sometimes it's nice to have a break and spend time celebrating all the things they can do, and forget about the hours and hours of therapies and appointments. They deserve it; they work so much harder than the rest of us. Imagine if, every day, we had to get up and work on all the things we're not good at over and over again. Imagine having to practice walking, or doing repetitive activities day in and day out, without a break. That is life for a person with a disability. No wonder they are often some of the most resilient, patient, and hard working people we will ever meet. They don't always have the luxury of just 'taking it easy'. Everything they do takes much more concentration and effort. Felix really is my hero. He takes on life with so much love and a huge smile, even though it's often challenging for him. He is incredible!

Monday, 20 May 2013

Adventures of Felix

Hiding on the bookshelf
My internet has been so frustrating the past few days, cutting in and out. I have tried to write my blog, but it was impossible. Hopefully it's all been sorted out today and I'll have a bit more success.

Felix has been a delight lately. Even though I am frantically packing up the house to move, he has still found ways to have fun and entertain himself. Empty, or half packed, boxes are a two year old's best friend, and he has been making the most of finding lots of new hiding holes wherever he can. Book shelves and cupboards, free of their usual fullness, have been perfect for him to climb in and on. He has barely played with his toys because there are way too many fun things to investigate at the moment.

Mummy's slippers
I got some enormous yellow slippers for Mother's Day and Felix is fascinated with them. I watched him, a couple of days ago, sitting on the floor trying really hard to put them on his own feet. After some persistence, he managed to get one of them on, but had the other one backwards. He tried to stand up, but found it a little bit difficult. He studied his feet for a while until he realised his mistake. He took off the backward one and turned it around the right way. I didn't think he would have a chance of being able to walk in them; I can barely do it but, true to form, he stood up and walked away like he'd been doing it for years! Always full of surprises that kid!

Due to packing, and lots of rearranging, the computer is currently sitting on the coffee table in the corner of our lounge room. Yesterday morning, I walked in the room to find Felix with the boy's headphones on, the computer mouse in one hand, and his other hand busily typing on the keyboard. He knows he's not allowed to touch the computer but, I must admit, I was pretty impressed with his skills. He must have been watching his big brothers because he knew exactly what to do. I felt a bit emotional, like I do every time I see him doing something new. His capacity to learn is so huge! Kids with Down syndrome can never be underestimated. They really are amazing little people, with so much potential, they just need to be given the opportunity.
Working hard on the computer

My funny Felix story of the week happened at dinner time last night. He has been snacking a lot lately during the day, on fruit, sultanas and sandwiches, so he hasn't been eating much in the evening. Last night I put his bowl of food, and his fork, on his high chair and he promptly threw them both across the room. I picked up his hand, gave him a gentle smack on his fingers and firmly said, "No". His expression didn't change, he didn't look even the tiniest bit surprised or upset. Instead, he smacked his own hand, copying what I had done. I tried to keep my expression serious, but it was such an unexpected reaction that I had to fight to keep a straight face!!

Friday, 17 May 2013


We have such a funny little guy. It was Felix's second group speech session today. He was pretty excited to be going up to the hospital because he loves seeing the Speech Pathologist and playing games with her. His excitement didn't last long because, when we were in the waiting room, one of the other little boys in his class started crying quite loudly. Felix's response was to cover his ears and hide under the chair. Even when it was time to head to the therapy room, he buried his head in my shoulder and refused to look at anyone.

The session started with the 'welcome song'. Felix couldn't bear to miss out, so he kept his head in my lap but still managed to do the signs he knew, and wave to his little friends, by putting his hands behind his back. It looked like he had his arms on backwards and was pretty funny. All the parents couldn't help but giggle at him. He was determined to join in even if he had to reduce the noise by having his head buried. It was great improvisation on his part, and kept us all entertained.

As the session progressed, the same little boy who had been crying earlier, started again. Poor little guy, it just wasn't his day. It was quite noisy, especially as the room is small and Felix really found it hard to cope with. I was so proud of him though because, despite his level of discomfort, he put in an effort to participate in the activities. His favourite thing this morning was choosing from a variety of different pictures of vehicles, and signing what it was and then posting the picture into the crocodile's mouth. The crocodile was made out of cardboard and Felix thought it was great. The Speech Pathologist made it snap its' teeth when Felix put the picture in its' mouth. He loves it when we sign crocodile with our hands, and snap them towards him, so this activity was right up his alley. He hid his face when it wasn't his turn, but always joined in when it was his turn to choose. Baby steps, but we're getting there.

Felix has made such huge improvements in his ability to construct things with blocks. I kept the baby Duplo I had when the other kids were small, and it has been perfect for Felix's hands. He finds the regular Duplo a bit difficult to separate, but the baby ones with the rounded shape have been so helpful for him. He now builds elaborate towers and will concentrate for a long time on what he is making. Last night I noticed him lining up the blocks neatly in a row. He spent ages doing it and seemed quite pleased with himself when they were all lined up nice and straight. He's happy to pack the blocks up when he is finished, but once the toybox is full, he likes to tip them all back out again, so we're halfway there!
Cute little feet butterfly

Today, our new neighbour came in for a visit. Felix loved having a new audience and put on his best performance, smiling and being his usual charming self. He is into counting at the moment and, even though he can't say the words, I know what he is doing. He kept touching our neighbours' shoulder and then coming over to touch mine. I counted 'one' when he touched her, and 'two' when he touched me. He kept going back and forth for a while. He loves it when he knows he's being understood. He was making great sounds, attempting to say the words. After counting for a while, he decided to touch our noses and then his own. I'm glad our new neighbour is quite laid back because Felix didn't respect any personal boundaries today. He wanted to be up close and personal! She didn't seem to mind. I think he had her wrapped around his finger pretty quickly!

Wednesday, 15 May 2013

Not Feeling It

Rudolph nose
Felix wasn't quite himself at Kindergym today. There were a lot of kids there and quite a few were 'squealers'. Felix kept looking at me, with a sad face, signing 'hear' and then covering his ears. It was way too loud for him. He wasn't very happy at all, poor little man. Whenever the noise quietened down, he played and jumped but, as soon as it got loud again, he curled up in a little ball with his hands over his ears. I really felt for him because I could tell he really wanted to play, but the noise was too overwhelming. Even at song time, Felix was really excited, but the little one next to him just kept squealing so he buried his head in my lap. He was ready to go by the end, signing 'finished, goodbye and car'. I got the hint!
Watching Play School

Even when we got home, Felix was a little bit sad. He looks like he's getting a bit of a cold. His nose is bright red and he's coughing a bit. His 'number 2's' have been pretty putrid too, so we'll just have to wait it out and see if it develops into anything. He only had to bump himself slightly today and he started to cry. If the dogs wagged their tail near his face, or pushed past him, he sat down broken hearted. He certainly wasn't much of a tough guy today. Hopefully he won't get too sick. He's due to have his next lot of surgery on his ears in a couple of weeks, so we need him nice and healthy for that.

Cuddles with Aaron
Our little man is loving his new big bed. Often, at sleep time, one of the bigger boys will go and climb into bed with Felix for cuddles. He thinks it's hilarious and hides from them under his quilt. Aaron and Isaiah are so good with him. They tickle him and play with him, making him laugh his head off. They sing songs with him and keep up with his demands of doing the actions to his favourite songs. His bed is so big, compared to his tiny little body, that he can roll around and be really restless, but still stay on the bed without falling off. It's perfect!

Monday, 13 May 2013

Where is Felix?

Wearing Mummy's shoe
Felix was one of only two little ones at his Special Needs Playgroup this morning. He was in his element. He pretty much had the whole place to himself, so he did lots of exploring and playing, and quite a bit of vocalising. When I asked him about the toy butterfly he was holding, he actually said "butta-iy" I actually thought I might have misheard him but, when Felix's teacher said, "He just said butterfly", I knew it wasn't just my imagination. He seems to find 'B' words the easiest to say. He consistently says 'ball' and 'book' and will also say 'baby' and 'brother' (buvu) sometimes. He is slowly starting to use different sounds as he plays and, although they haven't developed into specific words yet, he is certainly building his repertoire and I'm so proud of his efforts.

We always sing a 'goodbye' song at the end of playgroup. The words are Where is Felix? Where is Felix? There he is. There he is. Hope you had a good time. Hope you had a good time. Goodbye to you. Goodbye to you. We use key signing with Felix, so we don't sign every single word. In this song we sign the word 'where', and then his name (which is the first letter of his name signed twice). We then point to Felix (there he is). We sign the word 'good' and then wave 'goodbye'. I am so pleased to say that Felix did every single sign/action today for the very first time. He did such a great job and looked like he was thoroughly enjoying it. When it was time to sing to his little friend, he pointed to her, signed 'good' and waved goodbye as well. Such an amazing little person.
Tickles on Mother's Day morning

After Felix had breakfast this morning, he went off to play while I got organised for the day. A few minutes later I could hear a thud, and then silence, then another thud. Then I heard Felix make one of his frustrated noises before another thud. Eventually, after a few more 'thuds', Felix limped his way into my room, with one bare foot and the other in one of my big sneakers. He had a huge smile on his face and looked pretty proud of his efforts. At least it explained what all the noise was... him desperately trying to lift my shoe off the ground with each step. I was pretty impressed that he managed to get all the way up the hallway. His ankles are so floppy due to hypotonia, so it was probably great exercise for him.
Mr Serious

I don't know how many of you remember me telling you the story of Iris, a beautiful little girl with Down syndrome, who passed away due to complications from pulmonary hypertension. It really shook up all of us in the Down syndrome community who had been following her story. I woke up this morning to the beautiful news that her Mummies are expecting another baby later this year. It has been such a heartbreaking time for them as they have had to adjust to life without their precious little one. Although Iris will never be forgotten and will always be an important part of their lives, I'm so glad that they will, once more, have a little life to fill their arms and bring them joy. Congratulations girls x x x

Saturday, 11 May 2013

Through His Eyes

He brings so much joy
I love looking at the world through Felix's eyes. He observes everything with so much wonder and delight. He notices so many things about the world around him, which I usually take for granted. I'm sure he has a sixth sense about when people need a bit of cheering up too. Yesterday, at the shops, he had so many people stop to tell him how happy his smile made them. One lady commented that he had the most infectious laugh. It's always so much fun to watch him interact with people and see, even the saddest looking people, walk away from him with a smile.

Felix was sitting on a coin operated Thomas the Tank Engine outside the supermarket yesterday. He loves trains and had walked over to it signing 'train'. He was studying it all over, pressing the buttons and looking at the wheels. After a couple of minutes, a cleaner came to empty the bin alongside the train. Felix climbed down quietly, and stood next to her and watched her; she was much more interesting than the train. She was busily doing her job and didn't notice him at first but, after a while, she looked down at him and her whole face lit up. She told him that he had the most beautiful eyes and such a gorgeous smile. He thought it was great and stood grinning at her for a while before he set off on his next adventure; the butcher shop.....
Are you awake?

Felix has a fascination for those giant statue animals, often seen outside a butcher store, or used for advertising, or in a themed restaurant. He loves them..... from a distance. Our local butcher has a large cow, standing on its' hind legs, on one side of the shop, and a big statue of a jolly butcher on the other. Felix thinks the cow is especially great, and took off signing 'cow' and rushing over to it as fast as his little legs would go. He stopped a couple of metres away, still frantically signing 'cow' and intermittently pointing at it. I picked him up to take him over to touch it. The noise Felix makes when he's frightened of something like that is a little hard to explain; it's a bit like the sound a cat makes when you step on its' tail, just short and sharp. He made that sound and quickly climbed up my shoulder, also like a cat. I touched the cow myself, to see if Felix would relax enough to do the same, but he wasn't having a bar of it. I took him over to the statue of the butcher and he had the same reaction. He was fascinated, but there was no way he was going to touch it.
Felix and his partners in crime

Yesterday morning, Felix attended his first group speech session. There were only two other children there so it was a nice, small group, perfect for Felix. The theme for the week was animals, so the Speech Pathologist had set up three little toy barns for the children to play with. First, the children had to find the animals that were hiding around the room. Felix enjoyed searching for his animals and took them back to his barn and started to play with them. After a couple of minutes, he started looking at the barn a little boy next to him was playing with. I was completely shocked when he got up, and walked over to the little boy, sat down close to him and started looking at his barn. The Speech Pathologist elbowed me; she was as surprised as me that Felix had initiated playing with another child. It was brilliant.....until the other little boy decided that he didn't want Felix to play with him, and shouted right in his face. Oops! One step forward, two steps back. Felix dropped his bottom lip, moved to a safe distance and then lay prostrate on the floor. It didn't last long because the next activity was singing and Felix won't let anything stand in the way of him singing! What was the song we sang? You guessed it...Old MacDonald!

Thursday, 9 May 2013


So thankful for sock cat!
It's been an exhausting couple of days, for both me and Felix. I made a spur of the moment decision to do a trip to the city, on Tuesday, with Felix. My plan was to do a bit of shopping and catch up with some of our older kids, and get to the final Early Intervention at Down Syndrome SA, to say goodbye to the coordinator who is leaving. The trip usually takes 4 hours each way, so I'd planned to set out early on Tuesday morning, stay overnight and drive home on Wednesday.

I didn't sleep well on Monday night. My stomach didn't feel good, but I put it down to something I ate for dinner the night before. I woke up already tired, but determined to get away early for our long drive. The car was packed, and Felix and I left town at 7am. Fifteen minutes out of town, one of my brand new tyres went flat and I quickly pulled off the highway and called the RAA for help. They took an hour to arrive, changed my tyre and I drove back in to town to the place that had put on my new tyre. They were puzzled as to what had happened because there was no puncture, so they replaced it for free and I left for my second attempt at driving to the city. All this time, Felix had happily sat and played with his sock cat, and watched his Play School DVD in the car (such a great invention!)
Yummy sock tail

At 9.30am, I made my second attempt at starting our 4 hour journey. An hour and a half into our trip, the tyre on the opposite side of the car went flat. This time, we were literally in the middle of nowhere. I phoned the RAA a second time and waited....and waited....and waited. It ended up, they had driven in the opposite direction to what I had told them, so they couldn't find me. After an hour and a half, my patience was disappearing fast. Thankfully, a farmer who was out in a paddock, saw Felix and I standing on the side of the road and came to our rescue. He was so lovely and changed the tyre quickly and we were on our way again.  This time, I had to drive another 80km to another tyre place to get the second one replaced; there was no puncture in that one either!! They took off all my tyres and checked them, then sent us on our way. We finally made it to the city at 5pm.... 10 hours after we had started. Soon after we arrived (at Joel and Bekah's house), I started vomiting. Aaaaaaagh!!! What a day!!

Now for the good news...

Noah learning to walk
There is a huge, long, freight train which travels along the highway which has so many carriages, they would be difficult to count. When Felix and I were stuck on the side of the road, I could see it coming in the distance. I pointed it out to Felix and he started signing 'train'. He was so excited to see it up close and his eyes didn't leave it. When the engine got near us, the driver waved and tooted the horn for Felix. It was pretty awesome! Felix thought it was great and it certainly broke up the monotony of being stuck with a broken down car. The train driver will never know how much I appreciated it. There is only so much you can do to entertain a two year old on the side of a highway!

I know I affectionately call Felix's favourite stuffed animal, the 'ugly' sock cat, but I will be much nicer to it from now on. That sock cat kept Felix from complete boredom during our ridiculously long day. He played with it, making it jump and dance. He sat it on his head and turned it upside down. He chewed it and sucked on its' tail. The cutest thing, by far, was when he put it over his shoulder and said, "Ahhhh" while he patted it on the back. I can't believe how long it kept his attention. So a huge thank you to sock cat (and to Amy for her choice of gift for her little brother).
Feeling extra cuddly, a bit warm and his
tongue is sticking out... usually signs
that he's starting to get sick :(

Spending time with Bekah, Joel and Mel, and, of course, little Noah, was the highlight of our trip (and a very brief hello to Daniel and Cate). I was feeling lousy, but they made sure I had a comfy bed ready and a yummy home cooked meal.  Little Noah showed off, taking some of his first steps by himself, over and over again. Such a clever boy. He and Felix played really well together, sharing toys and giving each other kisses. Felix was so thankful to be out of the car and enjoyed having his nephew to play with. He was such a trooper all day, never complaining and not crying once throughout the whole trip. He really is precious.

We got home with all four tyres intact, last night. Felix was so tired, he just wanted to go to bed, as did I. He slept well, but has been a little bit unhappy today. I'm hoping it's just because he's worn out from the trip and he's not getting sick again. Poor little man kept tripping over things and bumped his head a couple of times, which is very unusual for him. He has been extra snuggly and felt a little bit warm before he went to bed. Hopefully another good sleep will help him feel better.

Monday, 6 May 2013

Who Needs Words?

So much love!
When I look at Felix, I see a perfectly 'normal' two year old, developing at the same rate as all his siblings did. I don't really think about milestones, and can't really remember at what age the other kids did things, unless I consult their baby books. It's not until I go on Facebook and read someone's status about a conversation they had with their two year old, that I'm reminded, "Oh, that's right, the other kids were having quite grown up conversations by two!" Does it upset me? I can honestly say it doesn't bother me at all. I know the same can't be said, for other parents of kids with Down syndrome, and that's perfectly OK too. We are all different. I'm sure I probably stress about things which other parents wouldn't. We all have different experiences to share.
Cup of tea?

I've often wondered why the whole milestone thing doesn't bother me too much and, I've come to the conclusion, that after having 7 other 'typical' kids, who seemed to grow up overnight, I'm enjoying the slower pace that comes from having Felix. I remember, as a young Mum, feeling like there was a lot of competition, in baby groups, to see who's child was the first to reach certain milestones. It was like you earned bragging rights if your child was the first to sit up, or the first to take his/her steps. There was a silent pressure to make sure your child was 'up to par' or behaving appropriately. This time around, Felix is just Felix. It's not a competition. People (in 'regular' baby groups), don't expect Felix to be doing everything their kids are doing, so when he does, people seem genuinely excited with me.
Old MacDonald

There is such a wide range of what is 'average' for children with Down syndrome. Some kids talk extremely early, and some are still developing their speech as young adults. Some will be running around and climbing at age 2, while others are still learning to sit up. We, as parents of kids with Down syndrome, realise that our kids have to work so much harder, than 'typical' kids to do to learn the things they do, so the celebration when they do reach a milestone is something we all celebrate together!

I was talking to Felix's playgroup teacher this morning, and telling her about my realisation that Felix isn't talking, like other two year olds yet. Her reaction wasn't what I expected, but I agree with her 100%. She pointed out that he is communicating just as well as other two year olds, just in a different way, and it's true. Felix uses signs consistently now and, what he can't sign yet, he will tell us in other ways. For example, every time he sees a fly inside the house, he motions with his hand in a 'Shoo, fly' motion. He will notice the tiniest fly, that I haven't even seen yet and he will let me know where it is so I can get rid of it. Another example was when I was pushing Felix on a swing today. He had been on it for such a long time, so I stopped it and asked if he wanted to get off. I held out my arms to him and he gently pushed them away and started rocking his body to get the swing to start moving again. He hadn't finished. He wanted to keep swinging.
Busy boy

Felix has been in the best mood, these past few days. He has been full of life, and wanting to play and interact with everybody. Last week, at playgroup, he lay on the floor all morning but, today, he ran around outside and played. He pushed a toy car around, threw some balls and crawled through the tunnel. Inside, he enjoyed spending time with his therapists, building towers with blocks and playing in the sensory box. He especially liked playing with the Old MacDonalds farm board, sticking on the velcro animals, signing the ones he knew as he put them on the board. Of course he had to sing, too..... "ee, i, ee, i, oh!"  

Friday, 3 May 2013

Bedtime Antics

Testing out the new bed with Aaron
I ordered Felix a double bed, about a week ago and we went to pick it up yesterday. I'm not a huge fan of  leather-look beds, but the design was perfect for what we wanted for Felix. It's really low to the ground (about the same as his toddler bed), and the soft sides are perfect for him to climb up and down on. He was forever bashing his head against the side of his toddler bed, being such a worm when he sleeps, but won't have those problems with this nice, soft one. Hopefully it will last him well into his teenage/early adulthood years (as long as he doesn't decide to chew on it!) I'm looking forward to having a comfy spot to lay next time he's sick; it will sure beat laying on the floor!

I decided, in my infinite wisdom, to 'quickly' put the bed together before Felix's bedtime (it was already 5.30pm at this point). I have put together many pieces of furniture and like to think I can match the boys with my assembly skills. This bed, however, proved to be a challenge. I'm sure that when the manufacturers of furniture design these things, they have an evil laugh as they imagine us mere mortals trying to put them together. It took forever to assemble it! It didn't help that he was trying to assist me, balancing screws along the edge of the bed and then putting them in his mouth; climbing and touching everything in sight. I was trying to be patient but, after dropping a piece on my leg and then cutting my finger, it was a struggle.
Could he get any cheekier?

Finally, after 7pm, Felix's bed was complete and there it stood, literally covered in my blood, sweat and tears! He thought it was fantastic. He climbed on it, rolled on it and lay on his pillow with his monkey and sock cat. His brothers tested it out and both said how lucky Felix was and asked why they didn't get to have a double bed as well? Isaiah and Aaron have already decided that they will have sleepovers in Felix's room sometimes, as long as he doesn't wriggle too much.

Bedtime came along, and Felix was more than happy to snuggle up on his new bed and wave goodnight. Everything was quiet through the baby monitor, so I assumed he had gone peacefully to sleep, and had images in my mind, of his tiny little body in that big bed. Just before I went to bed, I went to check on Felix. There he was, sound asleep, on the floor! After all my efforts there he was, looking quite cosy, all curled up on the floor next to the bed. He obviously wasn't quite sure about his new bed. I carefully picked him up and put him up on it, and patted him until he was back in a deep sleep. I heard lots of tossing and turning during the night, so I'm not sure if he stayed on the bed the entire time or not.
Asleep... on the floor!

Felix happily went to sleep, on his new bed, for his day sleep today so hopefully he'll stay there all night as well. He must have been tired tonight because he carried his monkey, his cat, and a cushion from his bed, out into the kitchen earlier, to give me the not-so-subtle hint that it was bed time. When I took him to his room, he snuggled onto his bed, with his bottom up in the air and his arms tucked underneath him, ready to go to sleep. We have had such a beautiful day together today. He has been in a gorgeous mood; so happy and cuddly. As I kissed him goodnight tonight, I felt extra thankful that he came into our lives. Even on days when life seems out of control and full of sadness, he is a ray of sunshine. He knows nothing but joy, and it's infectious!

Wednesday, 1 May 2013

So Much Persistence

I've always loved the fact that Felix is so good at entertaining himself; enjoying his 'alone' time and using his imagination. As a Mum, of a two year old, I'm always a little bit suspicious if Felix goes too quiet, so I will peek into the room to make sure he's OK, but I do it quietly so I don't disturb him if he's enjoying being by himself. Yesterday, he went really quiet, so I crept into the room to see what he was up to. He had got all of his plastic bowling pins out of his toy box, and was trying to stand them all up. Two of them stood up easily, but the third one kept falling over on the soft carpet. I was amazed at Felix's patience as he persisted over and over (about 6 times), before it finally stayed upright. He then moved onto the fourth pin, which stood up easily but, while standing it up, he knocked over the third one with his arm. He patiently went back to it, and repeated the same process again. Eventually he had all six pins standing in a row. He looked very satisfied with his achievement, and then used his finger to point at each one. I knew he was counting them, even though he can't actually say the words, so I started counting out loud "one...two...three..." He looked up at me with a massive smile and I could tell he was so pleased that I knew exactly what he was doing. We counted them a few more times before he laughed and knocked them all over.
I'm stuck!

Felix had a friend over to play yesterday. He did his usual 'shy' thing, for the first ten minutes or so, hiding his face and peeking out between his fingers, but after that he was fine. His little friend is almost twice as tall as Felix, and quite chatty but, for some reason, Felix doesn't seem to be worried about him. His friend has Autism, so it was really interesting for me to watch him and Felix together; both kids with a 'disability', but both of them so full of personality and joy, it was absolutely beautiful. They each have a language all their own, but they seemed to connect with each other. When I put Felix to bed, for his sleep, his little friend followed me into the room, sat on the edge of the bed and leaned his face close to Felix's. Usually, that would freak Felix out, but it didn't. His friend said something to Felix in his own little language, and then said, "night, night". Talk about cute!!

I was folding the washing this morning and, as usual, Felix was being a big helper. When I walked out of the room to put some clothes away, Felix had been wrestling with a fitted sheet, giggling his head off as he hid underneath it. Just before I came back, I could hear a 'protesting' sound coming from the room. Wondering what I was going to find, I walked back into the room to find Felix with the sheet wrapped around his head, and both of his arms. It looked hilarious, but he was completely stuck. He wasn't crying, but he was definitely trying to tell me that he needed some help. Being a mean Mum, I quickly took a couple of photos first, before rescuing Felix from the sheet that was attacking him. It was too good a photo opportunity to pass up.
Hurry up Mum!

This morning Felix and I went to Kindergym. We went to a later session that we usually do and there were only five children there, including Felix. It was perfect for him because he had plenty of room to play without coming face to face with a lot of other kids. As usual, he was fascinated with watching the children jumping on the trampoline. He gets mesmerised by them and I'm sure he'd love to be up there jumping just as high. I picked him up and helped him jump on the big padded gymnastic mats, as high as my arms could lift him. He laughed so much and every time I stopped, he signed 'again'. I did it until my arms couldn't do it anymore and then threw myself on the mat next to him. He gave me big cuddles; I know he appreciated that I'd helped him :)