Thursday, March 21, 2013
Monday, February 18, 2013
A truth
Kahil Gibran “When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.”
Tuesday, February 5, 2013
What you fear most.
When you sat in that hospital bed or in your house, when they told you your child had Down syndrome what did you fear most??
People staring?
Behavior problems ?
People judging you and comparing your child to their own ?
Strained relationships between siblings, your partner?
Feeling trapped, burdened by your own child?
Well those were some of the things I feared .........
Yesterday my fears were realized.
It was the worst day for years, I felt completely crushed by Down syndrome, yesterday I hated it.
What started out as a great idea to attend the local Story-time at the library ended with me screeching through gritted teeth "we are going home" and me literally pushing Cy to walk faster across the library floor while I carried a a wiggling growling Owen out on my hip.
Yesterday I collapsed to my kitchen floor and sobbed- my poor 5 year old Cy had to console me and all I wanted to say to him is "I am so sorry.....so sorry your brother has Down syndrome " so sorry you didn't get to stay and do the craft at the library because I can't control him"..... I am just so sorry"
But I didn't say "sorry" to him I just wept and told him thank you for being gentle and caring. I made an early lunch dumped it on the table for them and went and went and hid in my room, in my bed. I rang my husband, told him how I just can't do this anymore, I told him I am weak, I felt completely drained.
Storytime was so horrible, Owen was so horrible, he wouldn't listen, he was disruptive, he made a real fuss and I didn't manage very well, I was snappy and embarrassed and cringing and jealous of all those perfect children (especially the ones under the age of 2 who sat like little angels).
Yesterday, I hated Down syndrome.
I felt like Owens behavior was all "its" fault. Oh I could blame the storyteller a little (who was quite disorganized and ditzy) but really it all came down to Owen........and me.
Today, I am bruised, reflective, sad and I feel ashamed for the way I marched poor Cy out of the library and for slamming the car door when I put the boys in (so loudly it frightened an old woman walking past!) and for the way I roughly hauled Owen out of the car when we got home. I feel embarrassed for looking like the crazed, flipped-her-wig-mother-of-the-growling/screaming-kid-with-Ds and the crying older brother who just wanted to stay for craft and for the uncomfortable looks and the looks of pity from them people at the library. I am sorry for putting my sweet boys in that situation. They totally deserve better from me.
I don't have anything amazing or insightful or healing to say about yesterday, it's was a bleak day in my parenting, it sucked..... big fail.
Today I get to try again, at being the parent I want to be. It is a tough gig, I know that. Sometimes I want to have that picture perfect family or at least, you know, the family that can take disability on ~lying down...the family that can suck it up and get on with life. But sometimes.... sometimes it is just fucking hard. Sometimes I just want to crawl away.
Today I don't hate Down syndrome but yesterday I did.
People staring?
Behavior problems ?
People judging you and comparing your child to their own ?
Strained relationships between siblings, your partner?
Feeling trapped, burdened by your own child?
Well those were some of the things I feared .........
Yesterday my fears were realized.
It was the worst day for years, I felt completely crushed by Down syndrome, yesterday I hated it.
What started out as a great idea to attend the local Story-time at the library ended with me screeching through gritted teeth "we are going home" and me literally pushing Cy to walk faster across the library floor while I carried a a wiggling growling Owen out on my hip.
Yesterday I collapsed to my kitchen floor and sobbed- my poor 5 year old Cy had to console me and all I wanted to say to him is "I am so sorry.....so sorry your brother has Down syndrome " so sorry you didn't get to stay and do the craft at the library because I can't control him"..... I am just so sorry"
But I didn't say "sorry" to him I just wept and told him thank you for being gentle and caring. I made an early lunch dumped it on the table for them and went and went and hid in my room, in my bed. I rang my husband, told him how I just can't do this anymore, I told him I am weak, I felt completely drained.
Storytime was so horrible, Owen was so horrible, he wouldn't listen, he was disruptive, he made a real fuss and I didn't manage very well, I was snappy and embarrassed and cringing and jealous of all those perfect children (especially the ones under the age of 2 who sat like little angels).
Yesterday, I hated Down syndrome.
I felt like Owens behavior was all "its" fault. Oh I could blame the storyteller a little (who was quite disorganized and ditzy) but really it all came down to Owen........and me.
Today, I am bruised, reflective, sad and I feel ashamed for the way I marched poor Cy out of the library and for slamming the car door when I put the boys in (so loudly it frightened an old woman walking past!) and for the way I roughly hauled Owen out of the car when we got home. I feel embarrassed for looking like the crazed, flipped-her-wig-mother-of-the-growling/screaming-kid-with-Ds and the crying older brother who just wanted to stay for craft and for the uncomfortable looks and the looks of pity from them people at the library. I am sorry for putting my sweet boys in that situation. They totally deserve better from me.
I don't have anything amazing or insightful or healing to say about yesterday, it's was a bleak day in my parenting, it sucked..... big fail.
Today I get to try again, at being the parent I want to be. It is a tough gig, I know that. Sometimes I want to have that picture perfect family or at least, you know, the family that can take disability on ~lying down...the family that can suck it up and get on with life. But sometimes.... sometimes it is just fucking hard. Sometimes I just want to crawl away.
Today I don't hate Down syndrome but yesterday I did.
Wednesday, January 23, 2013
Park visit
Well the park visit went as expected...
A glimpse of conversation.
Run off to round-up Owen.
Bring Owen back to the playground.
Resume conversation for a minute,
and repeat Owen round-up.
I wish this town had a fenced playground!
But it actually wasn't as bad as it sounds.
Sure I was knackered after running all over the place for Owen but there were also moments when he stayed and played, or had a drink or something to eat, so I did get little bits of conversation and Cy had a really great time with his friend.
So on the whole, it wasn't easy but it was worth it.
I also worked out that the kids are much faster at running down and rounding-up Owen than I am! (mental note: invite more kid helpers next time).
A glimpse of conversation.
Run off to round-up Owen.
Bring Owen back to the playground.
Resume conversation for a minute,
and repeat Owen round-up.
I wish this town had a fenced playground!
But it actually wasn't as bad as it sounds.
Sure I was knackered after running all over the place for Owen but there were also moments when he stayed and played, or had a drink or something to eat, so I did get little bits of conversation and Cy had a really great time with his friend.
So on the whole, it wasn't easy but it was worth it.
I also worked out that the kids are much faster at running down and rounding-up Owen than I am! (mental note: invite more kid helpers next time).
Monday, January 21, 2013
Stay or go?
Meant to meet with a new friend at the playground in an hour or so. Cy is good buddies with her little boy. I know Owen, I *know I will be chasing him all over the place, he loves to RUN away at this playground and he is fast!
I hate that I feel like quitting, throwing in the towel because chasing Owen around seems too flipping hard today. I hate that I will be running after my child instead of enjoying a conversation and getting to know this new friend. Owey is going to be 4 in March but when i am chasing Owen all over the place I feel like i am still parenting an 18 month old........I'm tired....
I am going to go to the park, Cy needs to play with his friend and my needs for connection and conversation are just going to take a back seat...again...and I have to give Owen a chance, the chance to make a mistake and learn from it, (and then repeat it again and again) hoping that maybe one day it will click,- Go to the playground and play THERE.
Okay so will post later how it goes.
I hate that I feel like quitting, throwing in the towel because chasing Owen around seems too flipping hard today. I hate that I will be running after my child instead of enjoying a conversation and getting to know this new friend. Owey is going to be 4 in March but when i am chasing Owen all over the place I feel like i am still parenting an 18 month old........I'm tired....
I am going to go to the park, Cy needs to play with his friend and my needs for connection and conversation are just going to take a back seat...again...and I have to give Owen a chance, the chance to make a mistake and learn from it, (and then repeat it again and again) hoping that maybe one day it will click,- Go to the playground and play THERE.
Okay so will post later how it goes.
Monday, January 7, 2013
Give him a go!
Cy (Owens 5 year old brother) has been having trouble with counting objects, he makes mistakes because he often skips an object, (don't know what's going on there) so over the past week we have been practicing counting - we count everyday objects, cars, toys, biscuits, sausages ......
I am trying to keep it fun but, I would be lying if I didn't tell you he is frustrating the hell out of me!
So anyway while i am being frustrated by Cys effort, I turn around and there is Owen sitting there counting ..... deliberately, slowly and perfectly! He understands and can use one to one correspondence!! WTH?!
When we started out on this journey, I thought I would be the LAST person to underestimate Owen! I thought I would be his champion and advocate, shouting from the roof tops to let him have go...now I realize I do underestimate him.....and I realize what a blessing it is to have these two boys Cy and Owen so close in age (even though they don't get on that great) and even though it has me tearing my hair out most days, they learn a lot from each other (good and bad!!), and O gets exposure to things through Cy that I don't think he will understand yet...but maybe he just might.....
I am trying to keep it fun but, I would be lying if I didn't tell you he is frustrating the hell out of me!
So anyway while i am being frustrated by Cys effort, I turn around and there is Owen sitting there counting ..... deliberately, slowly and perfectly! He understands and can use one to one correspondence!! WTH?!
When we started out on this journey, I thought I would be the LAST person to underestimate Owen! I thought I would be his champion and advocate, shouting from the roof tops to let him have go...now I realize I do underestimate him.....and I realize what a blessing it is to have these two boys Cy and Owen so close in age (even though they don't get on that great) and even though it has me tearing my hair out most days, they learn a lot from each other (good and bad!!), and O gets exposure to things through Cy that I don't think he will understand yet...but maybe he just might.....
Thursday, January 3, 2013
When to help?
Owen surprises me sometimes.
Like this picture he made using a magnetic toy we got for Cy back in November for his birthday.
He spent quite along time on this picture "hat-man" and the only direction I gave was to point to the long rectangle pieces and suggest they could be arms but he was the one that picked the pieces up out of the left hand side tray and put them on (and he chose to flip those two pieces over so the magnetic strip is up). He was getting pretty frustrated with the eyes and mouth as they weren't in exactly the right spot and his fine motor control is still clumsy (he barely has a pincer grip - actually- at best I would call it very weak). (So while I was wildly impressed with his art work I am also feeling guilty that I have never worked on fine motor skills with him). I felt sad when he cried out in frustration because he was trying to get the pieces in just the right relationship to each other and due to his clumsiness one of the other pieces would get moved as he placed the next piece.
At one point I thought he was about to completely lose it as he had knocked the eyes out of position (again) so I did step in to put the eyes back in their places, part of me wishes I hadn't touched his work but the other part (the instinctive part) knows he might have picked up the tray and hurled it at that point, he just needed that tiny bit of (emotional) support and he kept working on the person and then that hat kept growing .........and growing.
When I reflected on it later I thought that, knowing "when to and how to" support my kids and when to "let them be" is the hardest part of parenting for me, I don't want things to be hard for my kids, I don't want them to be frustrated with the detail so that they give up on the bigger picture.
But I know I step in too quickly most of the time, I need to step back and wait and to give them more time and as little help as necessary (at just the right moment) (hey no pressure!!!) but it does make a difference, because Owen was really proud (me too) of his finished "hat man" so when I got the camera out to take some photos, Owen went and picked up the torch he had been playing with earlier and pretended to take photos of "hat man" too (you can see him holding the torch "taking a photo of hat-man" on the bottom edge of the photo)
So this also got me thinking about how important it is to give Owen different kinds of materials because there is no way he could ever draw something like this (like an average child might) especially with his weak fine motor skills. But maybe I can give him things like these magnetic shapes (preformed shapes) like a ?paper plate and ?some stickers or ?leaves and he can stick them on ? I am not a crafty person, it's just not me !
BUT I can see now how important it is - because theres stuff in there, in his head- he just needs to have the right materials to creatively express himself.
Crap this learning curve is steep
Like this picture he made using a magnetic toy we got for Cy back in November for his birthday.
He spent quite along time on this picture "hat-man" and the only direction I gave was to point to the long rectangle pieces and suggest they could be arms but he was the one that picked the pieces up out of the left hand side tray and put them on (and he chose to flip those two pieces over so the magnetic strip is up). He was getting pretty frustrated with the eyes and mouth as they weren't in exactly the right spot and his fine motor control is still clumsy (he barely has a pincer grip - actually- at best I would call it very weak). (So while I was wildly impressed with his art work I am also feeling guilty that I have never worked on fine motor skills with him). I felt sad when he cried out in frustration because he was trying to get the pieces in just the right relationship to each other and due to his clumsiness one of the other pieces would get moved as he placed the next piece.
At one point I thought he was about to completely lose it as he had knocked the eyes out of position (again) so I did step in to put the eyes back in their places, part of me wishes I hadn't touched his work but the other part (the instinctive part) knows he might have picked up the tray and hurled it at that point, he just needed that tiny bit of (emotional) support and he kept working on the person and then that hat kept growing .........and growing.
When I reflected on it later I thought that, knowing "when to and how to" support my kids and when to "let them be" is the hardest part of parenting for me, I don't want things to be hard for my kids, I don't want them to be frustrated with the detail so that they give up on the bigger picture.
But I know I step in too quickly most of the time, I need to step back and wait and to give them more time and as little help as necessary (at just the right moment) (hey no pressure!!!) but it does make a difference, because Owen was really proud (me too) of his finished "hat man" so when I got the camera out to take some photos, Owen went and picked up the torch he had been playing with earlier and pretended to take photos of "hat man" too (you can see him holding the torch "taking a photo of hat-man" on the bottom edge of the photo)
So this also got me thinking about how important it is to give Owen different kinds of materials because there is no way he could ever draw something like this (like an average child might) especially with his weak fine motor skills. But maybe I can give him things like these magnetic shapes (preformed shapes) like a ?paper plate and ?some stickers or ?leaves and he can stick them on ? I am not a crafty person, it's just not me !
BUT I can see now how important it is - because theres stuff in there, in his head- he just needs to have the right materials to creatively express himself.
Crap this learning curve is steep
Tuesday, January 1, 2013
Just photos - camping and NYD
Okay so time for few words and many photos. Of course it is summer here and over the xmas/new year break we packed up and went camping in the bush, the boys had such a great time, it was a really beautiful trip
This boy LOVES his dads ute !
Owen and Col sharing the love (of rocks!) (Col is a geologist)
See the giant leaf insect on Cols elbow? Cy wanted to hold it but couldnt bring himself to do it Lol
He was much braver with this gecko
A visitor before dinner
and another visitor (Cy was loving it!) we even saw sugar gliders at night gliding from tree to tree
Early morning camp breakfast
My bush baby
a rare photo of me (I am usually behind the camera)
Ha I love this shot 'ole Ma and Pa
We did a fantastic walk through some amazing rock formations (isnt this one amazing!). Owen walked the whole way over pretty uneven ground 2.6kms took us about 2 hours (with a stop for morning tea).
These boulders were huge and you could walk right in amongst them, it felt like we were in a cathedral
a rock just the right size for a rest, he did so great!
After a few days camped we headed back down to the town and for lunch at the pub.
Owen saw this sign on the front of the pub and said "cream, cream, cream" (icecream). We ordered our meal and the whole time Owen was telling the cook "cream, cream, cream"
The cook was so sweet she brought Owen a bowl of icecream to have.... with his chips! Owen was VERY appreciative with lots of "mmmmmmmming" it must have hit the spot after all that bushwalking.
As we were leaving the pub we met a man who used a walking stick, Owen took for a spin, it was so funny he walked up and down the verhanda of the pub with it, Cy stepped in to take it back to the man...which of course resulted in an argument.
After those days in the bush yesterday was New Years Day and we decided to make a break for the beach its a 2.5 hour one way trip but SO worth it we all enjoyed it so much, definately washed the woodsmoke and dirt from camping away.
"working" on those balance skills
he started out very wobbly and tipped into the water all the time
but he mastered it by the the time we left
The water was so perfect and we stayed in for hours until we were all wrinkled before heading home
Happy New Year!
Tuesday, December 18, 2012
Path of acceptance
Over the past few years I have read many times people saying they wouldn't take away the extra chromosome from their child even if they could.
For the most part of this 3.5 year journey, that is NOT how I have felt.
But these past few months I have been feeling differently, I love who he is and what he brings to our family and to our community.
There was one moment when we were in Vanuatu that really helped me to see it - what he brings to the world...
Owen was sitting with some local women and they were playing a game of "happy and you know it" and clapping their hands, but when Owen saw one of the ladies was not clapping he got up and went over to her - gently taking her hands in his he clapped her hands together and smiled encouraging her to clap along, she laughed and started clapping and he laughed back to her in such a joyful way that everyone laughed. So simple - but for me it was a glimpse of the beautiful inclusiveness and the "in the moment joy" that people with the extra bring to the world.
So I don't know if I am a bit slow on the acceptance path or if I am average or what, but it is only now I understand that to take the extra away would mean that Owey isn't Owey. And that would make our family and community so much the poorer.
For the most part of this 3.5 year journey, that is NOT how I have felt.
But these past few months I have been feeling differently, I love who he is and what he brings to our family and to our community.
There was one moment when we were in Vanuatu that really helped me to see it - what he brings to the world...
Owen was sitting with some local women and they were playing a game of "happy and you know it" and clapping their hands, but when Owen saw one of the ladies was not clapping he got up and went over to her - gently taking her hands in his he clapped her hands together and smiled encouraging her to clap along, she laughed and started clapping and he laughed back to her in such a joyful way that everyone laughed. So simple - but for me it was a glimpse of the beautiful inclusiveness and the "in the moment joy" that people with the extra bring to the world.
So I don't know if I am a bit slow on the acceptance path or if I am average or what, but it is only now I understand that to take the extra away would mean that Owey isn't Owey. And that would make our family and community so much the poorer.
Monday, November 12, 2012
A glimpse inside the crystal ball
Today i was sent a link with a photo attached
and for the first time ever
I felt like was looking into the future..
I could see Owen as an young man!
Wow!
Not only does the young guy with Ds and Owen look alike with their long blond locks but i love that this young man is participating fully in life.
Here is a couple of links of what this young man is up to
http://www.filmink.com.au/news/nonstop-possibilities/
http://sydney.edu.au/news/84.html?newsstoryid=10412
The path that this young man and his peers are forging here in Australia is making way the younger generations, kids like Owen, to come through school and into a more inclusive society.
So damn inspiring and exciting !
and for the first time ever
I felt like was looking into the future..
I could see Owen as an young man!
Wow!
Not only does the young guy with Ds and Owen look alike with their long blond locks but i love that this young man is participating fully in life.
Here is a couple of links of what this young man is up to
http://www.filmink.com.au/news/nonstop-possibilities/
http://sydney.edu.au/news/84.html?newsstoryid=10412
The path that this young man and his peers are forging here in Australia is making way the younger generations, kids like Owen, to come through school and into a more inclusive society.
So damn inspiring and exciting !
Thursday, October 25, 2012
Preschool and volcanos
Just a quickie post to say Owen started preschool last week, the children treat him like a baby "babies aren't allowed in the cubbie", bit heart breaking for me, but I am sure Owen is thinking "well I am NOT a baby!!, so I'm coming in"It is hard watching him adjust he is clearly so out of his depth communication wise, the teachers don't know sign (but are learning as we go ) they have made no accomodation for him, he doesn't have an aid, I don't kow if it's a good or bad thing I don't know what to think at all. He is only there two mornings a week, if he was there full time I would be more concerned but two mornings seems okay and he is definatley settling in, joining in cooking, painting and generally exploring.In other news we had an amazing trip to Vanuatu where Owen was treated with lots of love and good humour by the local people, Randall said "Owen should live in Vanuatu because people treat him so well there". I don't know if Owen is the first person with Ds to stand on the edge of an active volcano ( probably not) but he was AMAZING up there, just excited and happy and very relaxed ! He was also amazing with the local kids playing with them the moment he stepped into their village. It has been such a great experience for us all being in another country, only problem is we have been bitten by the travel bug!
Tuesday, September 11, 2012
More than ready
The last few weeks have been hard emotionally for me.
Owen has been difficult, he is cranky and bored easily, so he does things he shouldn't like playing with the CD player or he runs around and around the kitchen table - looking out from the corner of his eye - his new visual stim....arrrghhh.
He screams and yells a lot and this upsets Cy who cries and whines really loudly which makes Owen yell even louder.
To put it simply Owen can be hard work, he needs alot of attention, he is curious and naughty and he can be a down right bully, (Cy cops it most)and everyone is frustrated with him at some point during the day.
So I feel it is really time for him to move on to preschool a couple of days a week. I have mixed feelings about the fact that Cy and Owey will be in the same class, of course Cy will be able to help with signs and communication but I am a little worried that Cy will have lost his respite days from Owey, Cy really needs a break from him. I guess it's one of those 'suck it and see' moments (do you know that expression?). And anyway it will only be for 10 weeks before school closes for the year, then Cy will move to the Kindy room in 2013. (our school year runs from Feb till December).
Everything changes.
My hope is that with Owey in preschool 2 days he will appreciate and enjoy being at home again instead of running a terror campaign on the house and everyone in it.
Friday, September 7, 2012
June post that I didnt post
So June was a complete write off for Owen, he was sick with high temps for 6 days at the beginning of the month, then something changed and I knew he was in trouble, I took him to the doctors that day but she couldnt hear or see anything terribly wrong - "just an upper respiratory infection", I felt reassured.....but I was also troubled......I was having flashbacks to his first year when after his heart surgery when he contracted RSV and his airways were shot.
2 days later (8th day of high temps) we went back to the doctors and this time she could hear crackles in his lungs, she gave me a ticket to get an xray of his chest done - she didn't make it seem very urgent - she even said "get it done tomorrow" - I left the surgery and went straight to the Xray clinic - 10 minutes after having the xray, the doctor rang - Owen has pnemonia !
By this stage Col, Owen and I were exhausted, we were hardly sleeping at night, Owen would flap around, grunting, coughing, he was in our bed to save ourselves having to constantly get up to reassure him. Anyway we started him on antibiotics and braced ourselves for another night of very broken sleep - the doctor wanted to see him in the morning. By this time Cy had also come down with a bad chest ..
By morning she could hear even more crackles in his chest and she sent us off to the hospital, we were admitted and actaully for that first day he was kind of okay - they put an IV in and started giving him antibiotics - but come night time he CRASHED his O2 sats went down to 82 and he went onto oxygen.
He kept going down hill for the next 3 days, it was so scarey, at one stage I took him off the oxygen to take him to the toilet (he ended up totally regressing with toileting during our stay in hospital) and on the way back he was like a limp dishrag in my arms, his sats were 76 when we got him back into bed, he had stopped eating and drinking, I started to panic a little why wasnt he getting better??
On the 4 th day he woke up after another shitty nights "sleep" and wanted some orange to eat and then he ate all morning and started drinking again - which was lucky because the IV packed up that afternoon. Finally he had turned the corner, now we were just waiting for his sats to come back up - they kept on trying to wean him of the O2 but he just couldn't cope crashing back to 85 within a few minutes. This went on for days ,,,,,,.......,,,, and days. by this stage I had, had 2 nurses a doctor and the ward cleaner ask me "did I know that Owen had Ds when you were pregnant?" NOW I don't know what the F. that has to do with his care but I am SO sick of people asking me that question 3 years down the track, still answering THAT question. Does it matter?? Does my answer matter??? Does it give them permission to feel sorry for me OR think I have brought this situation on ourselves ??? I was so angry with thinking...what are they REALLY asking ???
They tried some steroids to reduce the swelling in his lungs - horrible stuff - Owen was hyper/agitated on it and I hated seeing him like that - the course of steroids was 3 days long and I wished each of those days away as quickly as possible.
At this stage (day 7 in hospital) I thought if we dont get him moving the junk that was in his chest was never going to get out, so I started taking him off the O2 and making him walk, and play on the floor until he would get lethargic and pale and then I would put him back on the 02.
On the morning of day 11 in hospital, and with Col and I completely shattered) we were finally allowed to take him home - his sats were sitting around 94 - but that was good enough - we were busting him out.
So - after 21 days of illness he was finally getting back to normal, well except for the toileting....so frustrating!
But then I started to feel sick .....really sick, I am pretty sure I got what Owen and Cy had had, it was a nasty flu and no wonder Owey got pnemonia, my chest was so tight and congested I really struggled to shift the junk on my chest, and I think it was only that Cy is a bit bigger and stronger that he managed to stay out of hospital himself. So after laying around for over a week and coughing until it hurt I started to feel better and Owen was starting to have less toileting accidents, Cy had stopped coughing too. And June was over !
July arrived - Owen is toileting again with no accidents, everyone is well.
And I've decided to be generous and think that people ask me if I knew Owey had Ds before he was born out of idle curiosity, nothing more.....
2 days later (8th day of high temps) we went back to the doctors and this time she could hear crackles in his lungs, she gave me a ticket to get an xray of his chest done - she didn't make it seem very urgent - she even said "get it done tomorrow" - I left the surgery and went straight to the Xray clinic - 10 minutes after having the xray, the doctor rang - Owen has pnemonia !
By this stage Col, Owen and I were exhausted, we were hardly sleeping at night, Owen would flap around, grunting, coughing, he was in our bed to save ourselves having to constantly get up to reassure him. Anyway we started him on antibiotics and braced ourselves for another night of very broken sleep - the doctor wanted to see him in the morning. By this time Cy had also come down with a bad chest ..
By morning she could hear even more crackles in his chest and she sent us off to the hospital, we were admitted and actaully for that first day he was kind of okay - they put an IV in and started giving him antibiotics - but come night time he CRASHED his O2 sats went down to 82 and he went onto oxygen.
He kept going down hill for the next 3 days, it was so scarey, at one stage I took him off the oxygen to take him to the toilet (he ended up totally regressing with toileting during our stay in hospital) and on the way back he was like a limp dishrag in my arms, his sats were 76 when we got him back into bed, he had stopped eating and drinking, I started to panic a little why wasnt he getting better??
On the 4 th day he woke up after another shitty nights "sleep" and wanted some orange to eat and then he ate all morning and started drinking again - which was lucky because the IV packed up that afternoon. Finally he had turned the corner, now we were just waiting for his sats to come back up - they kept on trying to wean him of the O2 but he just couldn't cope crashing back to 85 within a few minutes. This went on for days ,,,,,,.......,,,, and days. by this stage I had, had 2 nurses a doctor and the ward cleaner ask me "did I know that Owen had Ds when you were pregnant?" NOW I don't know what the F. that has to do with his care but I am SO sick of people asking me that question 3 years down the track, still answering THAT question. Does it matter?? Does my answer matter??? Does it give them permission to feel sorry for me OR think I have brought this situation on ourselves ??? I was so angry with thinking...what are they REALLY asking ???
They tried some steroids to reduce the swelling in his lungs - horrible stuff - Owen was hyper/agitated on it and I hated seeing him like that - the course of steroids was 3 days long and I wished each of those days away as quickly as possible.
At this stage (day 7 in hospital) I thought if we dont get him moving the junk that was in his chest was never going to get out, so I started taking him off the O2 and making him walk, and play on the floor until he would get lethargic and pale and then I would put him back on the 02.
On the morning of day 11 in hospital, and with Col and I completely shattered) we were finally allowed to take him home - his sats were sitting around 94 - but that was good enough - we were busting him out.
So - after 21 days of illness he was finally getting back to normal, well except for the toileting....so frustrating!
But then I started to feel sick .....really sick, I am pretty sure I got what Owen and Cy had had, it was a nasty flu and no wonder Owey got pnemonia, my chest was so tight and congested I really struggled to shift the junk on my chest, and I think it was only that Cy is a bit bigger and stronger that he managed to stay out of hospital himself. So after laying around for over a week and coughing until it hurt I started to feel better and Owen was starting to have less toileting accidents, Cy had stopped coughing too. And June was over !
July arrived - Owen is toileting again with no accidents, everyone is well.
And I've decided to be generous and think that people ask me if I knew Owey had Ds before he was born out of idle curiosity, nothing more.....
Wednesday, May 9, 2012
Oweys FAV Tunes
Owen is having a little burst of speech at the moment, which is so cool, I know it is something we will be working on for years to come but he is really trying so hard to overcome his dyspraxia, sometimes you can see the word wanting to burst out of his mouth he is trying THAT hard - it comes out all jumbled or with only one sound (which sounds nothing like what its meant to) words like "Open" are nearly impossible for him - even though he can say "Owen" easily, for me it seems like a small step from Open to Owen but he just hasnt made it yet.
I think what has helped him with speech recently is an English as a Second Language music CD by Dream English. Because the principles of teaching ESL to children is - repetition, simple songs sung slowly and clearly and with few but repeating phrases or words, just what Owen needs ! His favourites songs are I like Apples , Its a Dog and the Color Song (I have provided the youtube links to these songs and you can also download free flashcards for each of the songs from the Dream English Website and the audio files you can download from iTunes). We have the Dream English CD and we sign and sing along to these songs almost everyday they are great preschool age songs and he absolutely loves them and asks for them over and over.
Also Owey isn't enjoying Apps on the iPad so much at the moment, because he is loving watching youtube ! so his favourtie things are
Stories
The Very Hungry Caterpillar
The Tiger Who Came to Tea
Songs
10 little Numbers
Apple apple Aaa
Driving My Tractor (warning totally addictive !! his fav by far)
The Shape Train (there is also a number train, fruit, colors, alphabet ...etc (these are great because there is a good pause between each word which gives Owen time to have a try of each one as they come by.
Numbers Song (there are also versions in italian, spanish, german, japanese and french and both Owen and Cy love all of them !??? This song is nice and slow and repeated.
Its kinda great that he is choosing to watch things that are "good" for him and I definately think that he is learning speech from watching them over and over (well at least twice a day ;)
He is just starting to put a couple of words together when he talks, things like "there 'tis" when he finds something he has been looking for, and "Cy 'oool" (Cys at school). And the other day he said "I read it" as he sat to read a book, we all looked at each other to see who had said it - it was like the dog had suddenly spoken, I nearly fell over ! But its just a one off a tiny glimpse and then it was gone again, you can't make him repeat things like that when he sayes it, its just a moment, a flicker of fluency. I hope that with time and practice we will hear more of this kinda thing more often, rather than randomly, cause its in there !
I think what has helped him with speech recently is an English as a Second Language music CD by Dream English. Because the principles of teaching ESL to children is - repetition, simple songs sung slowly and clearly and with few but repeating phrases or words, just what Owen needs ! His favourites songs are I like Apples , Its a Dog and the Color Song (I have provided the youtube links to these songs and you can also download free flashcards for each of the songs from the Dream English Website and the audio files you can download from iTunes). We have the Dream English CD and we sign and sing along to these songs almost everyday they are great preschool age songs and he absolutely loves them and asks for them over and over.
Also Owey isn't enjoying Apps on the iPad so much at the moment, because he is loving watching youtube ! so his favourtie things are
Stories
The Very Hungry Caterpillar
The Tiger Who Came to Tea
Songs
10 little Numbers
Apple apple Aaa
Driving My Tractor (warning totally addictive !! his fav by far)
The Shape Train (there is also a number train, fruit, colors, alphabet ...etc (these are great because there is a good pause between each word which gives Owen time to have a try of each one as they come by.
Numbers Song (there are also versions in italian, spanish, german, japanese and french and both Owen and Cy love all of them !??? This song is nice and slow and repeated.
Its kinda great that he is choosing to watch things that are "good" for him and I definately think that he is learning speech from watching them over and over (well at least twice a day ;)
He is just starting to put a couple of words together when he talks, things like "there 'tis" when he finds something he has been looking for, and "Cy 'oool" (Cys at school). And the other day he said "I read it" as he sat to read a book, we all looked at each other to see who had said it - it was like the dog had suddenly spoken, I nearly fell over ! But its just a one off a tiny glimpse and then it was gone again, you can't make him repeat things like that when he sayes it, its just a moment, a flicker of fluency. I hope that with time and practice we will hear more of this kinda thing more often, rather than randomly, cause its in there !
Sunday, April 15, 2012
Reps update
So i just wanted to write down just what I have been doing with Owen during the past few weeks (re previous post).
I got him a little spray bottle so he can squeeze a mist out, rather than dirt or spit. He can work the spray bottle (building up his finger strength) while doing something that seems more purposeful, we sprayed the concrete, leaves on the bushes etc and still getting his visual fix of seeing the mist in the sunlight. We tell him to blow or whistle the moment he starts to do spit raspberries and it is working well, he loves the sound of whistling and stops pretty much right away.
If he goes under the deck to throw dirt and make dust clouds I entice him out by asking him to come and blow bubbles with me, the bubble mix is now stationed right at the back door so I can get it quickly, he comes out from under the deck pretty much right away now. I think the bubbles still meets his visual need, and it is so much better than him stirring up dust clouds for himself, we interact, we connect, he works his lips and breath control, makes me feel so much better!
Finally the last thing, I got some little plant pots we had left over and showed Owen how to fill them up and let the sand pour out the holes in the bottom of the pot, we used the pouring sand to fill up the toy trucks, he llikes this activity, Again I think it meets his sensory needs but its nice and CLEAN , lol
After writing the post about Owen playing in repetitive ways and how anxious I was feeling that he may develop/slide into autism, I finally went to bed. As I lay there, in the darkness I thought more about it and came to just one conclusion - that all I can do, really all I can do, is LOVE him right here, right now, TODAY ( because how much control have I got to stop the organic process of autism ? None! )
And I have enjoyed him so much over the past few days.
He seems lighter to.
It all seems to be paying off, because he is getting easier and easier to distract from those repetitive habits, he even smiled at me the other day when I found him under the deck (again), quickly signed "bubbles" and came out to me without me even asking. Yes he got his bubbles. Cheeky monkey.
I got him a little spray bottle so he can squeeze a mist out, rather than dirt or spit. He can work the spray bottle (building up his finger strength) while doing something that seems more purposeful, we sprayed the concrete, leaves on the bushes etc and still getting his visual fix of seeing the mist in the sunlight. We tell him to blow or whistle the moment he starts to do spit raspberries and it is working well, he loves the sound of whistling and stops pretty much right away.
If he goes under the deck to throw dirt and make dust clouds I entice him out by asking him to come and blow bubbles with me, the bubble mix is now stationed right at the back door so I can get it quickly, he comes out from under the deck pretty much right away now. I think the bubbles still meets his visual need, and it is so much better than him stirring up dust clouds for himself, we interact, we connect, he works his lips and breath control, makes me feel so much better!
Finally the last thing, I got some little plant pots we had left over and showed Owen how to fill them up and let the sand pour out the holes in the bottom of the pot, we used the pouring sand to fill up the toy trucks, he llikes this activity, Again I think it meets his sensory needs but its nice and CLEAN , lol
After writing the post about Owen playing in repetitive ways and how anxious I was feeling that he may develop/slide into autism, I finally went to bed. As I lay there, in the darkness I thought more about it and came to just one conclusion - that all I can do, really all I can do, is LOVE him right here, right now, TODAY ( because how much control have I got to stop the organic process of autism ? None! )
And I have enjoyed him so much over the past few days.
He seems lighter to.
It all seems to be paying off, because he is getting easier and easier to distract from those repetitive habits, he even smiled at me the other day when I found him under the deck (again), quickly signed "bubbles" and came out to me without me even asking. Yes he got his bubbles. Cheeky monkey.
Tuesday, April 3, 2012
Umm a few to many reps ?
Owen has always had a few quirky behaviors which have changed over time
Before he was mobile he used to stare at the back of his hand, like he was checking out a manicure, he also had what the doc called a habit spasm sometimes when he was sitting or laying on his back he would suddenly stiffen and roll his eyes to the top of his head, sheesh at first we thought it could have been seizures but we took a video to the paed (it took 4 days of trying to get a good video of it and then Owen did it as we sat down in the paeds office)! and he confirmed it was "only" a habit spasm. Later when Owen was bear crawling and he would be in the downward dog yoga pose he would drive any toy close by through his legs while putting his weight through his head and one of his arms. Once he started walking he lost this quirk too.
But at the moment I can't leave him outside for more than 5 minutes alone or else I find him "dusting" he loves to see the dust clouds billow up from sweeping the dirt under our deck or out on our driveway, I always tell him it's dirty and to stop and then try redirecting him, he is always easily distracted from his dusting but just as quickly goes back to it if I am not directly engaging him, so sad and maddening to see him trying to sneak back, I can't leave him unattended.. And inside if there is any sunshine streaming through the windows he will blow raspberries of spit into the light to watch them splutter out and fall, again I redirect, but often I just shut the blind to stop him doing it. And recently I notice he spends way to much time lying on the floor to drive cars back and forth close up in front of his eyes.
........ He's visually stimming right?
Scary shit. Really scary.
my resting heart rate is double what it should be, it makes me feel sick to think these behaviors might mean O has autism.
Or maybe it's just a DS thing right? ........or maybe not........
He is still his sweet self, still hates giving kisses or hugs...... Booow boooom (oh does random people at playgroup count?)
I am analyzing everything the kid does, eats, sayes........glimpses of that diagnosis trapdoor threatening to open..........again
Before he was mobile he used to stare at the back of his hand, like he was checking out a manicure, he also had what the doc called a habit spasm sometimes when he was sitting or laying on his back he would suddenly stiffen and roll his eyes to the top of his head, sheesh at first we thought it could have been seizures but we took a video to the paed (it took 4 days of trying to get a good video of it and then Owen did it as we sat down in the paeds office)! and he confirmed it was "only" a habit spasm. Later when Owen was bear crawling and he would be in the downward dog yoga pose he would drive any toy close by through his legs while putting his weight through his head and one of his arms. Once he started walking he lost this quirk too.
But at the moment I can't leave him outside for more than 5 minutes alone or else I find him "dusting" he loves to see the dust clouds billow up from sweeping the dirt under our deck or out on our driveway, I always tell him it's dirty and to stop and then try redirecting him, he is always easily distracted from his dusting but just as quickly goes back to it if I am not directly engaging him, so sad and maddening to see him trying to sneak back, I can't leave him unattended.. And inside if there is any sunshine streaming through the windows he will blow raspberries of spit into the light to watch them splutter out and fall, again I redirect, but often I just shut the blind to stop him doing it. And recently I notice he spends way to much time lying on the floor to drive cars back and forth close up in front of his eyes.
........ He's visually stimming right?
Scary shit. Really scary.
my resting heart rate is double what it should be, it makes me feel sick to think these behaviors might mean O has autism.
Or maybe it's just a DS thing right? ........or maybe not........
He is still his sweet self, still hates giving kisses or hugs...... Booow boooom (oh does random people at playgroup count?)
I am analyzing everything the kid does, eats, sayes........glimpses of that diagnosis trapdoor threatening to open..........again
Friday, March 30, 2012
The letting go
When I think about Cys seperation anxiety at preschool I have this vision, a mental picture - I see myself with baby Owen in my arms, he is very sick.....and needs an operation to mend his heart. I am looking down at Owen - all my attention is on him. And my other baby - Cy (he was 16 months when Owen was born), is holding onto my legs, holding on to ME tight. This picture has been with me since Cy started preschool, I didn't know why it appeared or what it meant.
Well I talked to a few people about it, some thought the vision was about my guilt, but I don't feel guilty at all, I feel quite detached from the picture.....it just is. In reality I did meet the needs of both of my little boys - I tandem fed both boys for nearly 4 months (weaning Cy at 20 months), yes my mind was full of worry, sadness and grieving after Owens birth but I used to relish being with Cy his cheeky, loveliness, kept me in the present moment kept me living, moving, breathing.
I got a bit lead astray with the suggestion it was about my guilt, I thought about that for a few weeks but decided in the end that really, truly it wasn't about guilt. Its all about Cy about how he feels - like he can't let go. Of course baby Owen got his operation and after about a year of sickness was finally well, and little boy Cy grew up too and now it is time for Preschool and Cy doesn't know how to let go of me, its a complete crisis for him. He has a great time once he settles but can take 2 + hours! But he really does like preschool, he tells me its only because I leave that he cries. He doesn't know how to let go, after all that's how how it was for him for nearly half his life !
It has taken me 8 weeks to work it out - how to transform this picture........to give it power. It happened last week when Cy and I were drawing with pavement chalk out at the front step, I drew a mother with a baby in her arms and I began to tell Cy a story about the mother who had a very sick baby and also a little boy. I drew the boy holding on tight to his mums legs. Of course eventually the little baby has an operation and isn't sick anymore but the boy is stuck fast to his mum legs and can't let go, he is afraid.
I asked Cy to tell the little boy to let go of his mums legs for just a little while and then come to his mummy's arms since she can now hold both of her children, now that the baby isn't sick anymore.
Cy totally 'got' it. And at the end of the story, gave me a great big bear hug and told me "at the end of Preschool you can cuddle me in your arms again" I hadn't even mentioned preschool !!!
I would love to say that, telling the story completely transformed the saying goodbye at Preschool this week, it didn't. He cried as soon as we got to the gate but unlike the other times it seemed he was much more aware of other stuff, he was crying as I put his inside shoes on but he would stop to ask me - who's name is that (on the lockers), then boo hoo again and "who's shoes are they" and more boo hooing, its like the sadness at breaking up it wasn't consuming him completely this week, almost feeling he could let go..?
We have only one week of school left (Cy only goes 2 days) before Easter holidays, 2 weeks off, just as we are on the cusp of a breakthrough, its a bit frustrating. So over the holidays I plan lots of playdates with preschool buddies for him and the retelling of the story ad nauseum.
And a little reminder of how lovely and sweet Cy was at the time Owen was born.
Well I talked to a few people about it, some thought the vision was about my guilt, but I don't feel guilty at all, I feel quite detached from the picture.....it just is. In reality I did meet the needs of both of my little boys - I tandem fed both boys for nearly 4 months (weaning Cy at 20 months), yes my mind was full of worry, sadness and grieving after Owens birth but I used to relish being with Cy his cheeky, loveliness, kept me in the present moment kept me living, moving, breathing.
I got a bit lead astray with the suggestion it was about my guilt, I thought about that for a few weeks but decided in the end that really, truly it wasn't about guilt. Its all about Cy about how he feels - like he can't let go. Of course baby Owen got his operation and after about a year of sickness was finally well, and little boy Cy grew up too and now it is time for Preschool and Cy doesn't know how to let go of me, its a complete crisis for him. He has a great time once he settles but can take 2 + hours! But he really does like preschool, he tells me its only because I leave that he cries. He doesn't know how to let go, after all that's how how it was for him for nearly half his life !
It has taken me 8 weeks to work it out - how to transform this picture........to give it power. It happened last week when Cy and I were drawing with pavement chalk out at the front step, I drew a mother with a baby in her arms and I began to tell Cy a story about the mother who had a very sick baby and also a little boy. I drew the boy holding on tight to his mums legs. Of course eventually the little baby has an operation and isn't sick anymore but the boy is stuck fast to his mum legs and can't let go, he is afraid.
I asked Cy to tell the little boy to let go of his mums legs for just a little while and then come to his mummy's arms since she can now hold both of her children, now that the baby isn't sick anymore.
Cy totally 'got' it. And at the end of the story, gave me a great big bear hug and told me "at the end of Preschool you can cuddle me in your arms again" I hadn't even mentioned preschool !!!
I would love to say that, telling the story completely transformed the saying goodbye at Preschool this week, it didn't. He cried as soon as we got to the gate but unlike the other times it seemed he was much more aware of other stuff, he was crying as I put his inside shoes on but he would stop to ask me - who's name is that (on the lockers), then boo hoo again and "who's shoes are they" and more boo hooing, its like the sadness at breaking up it wasn't consuming him completely this week, almost feeling he could let go..?
We have only one week of school left (Cy only goes 2 days) before Easter holidays, 2 weeks off, just as we are on the cusp of a breakthrough, its a bit frustrating. So over the holidays I plan lots of playdates with preschool buddies for him and the retelling of the story ad nauseum.
And a little reminder of how lovely and sweet Cy was at the time Owen was born.
Wednesday, February 29, 2012
Goodbye summer
Goodbye trips to the "Great river" (Cy gives everything his own names)
Goodbye hikes to see the wildflowers and the big rocks.
Goodbye spontaneous swims in your clothes
And picnics for morning tea
Goodbye late evening, last minute plays at the park
Goodbye summer
Sunday, February 26, 2012
Random thought of the day
Owen has been little for soooo long.
Everyone at playgroup was talking about how fast their kids grow up.
One kid is walking at 8 months old (way too early!)
I know where those parents are coming from, but
I sat there thinking about complaining
HOW BLOODY LONG IT'S TAKING FOR MY KID TO GROW UP
I didnt make that statement,
I thought it would be met with crickets....chirp, chirp chirp........
Or worse
someone saying "oh but you get to enjoy each stage",
blahh gag.
Everyone at playgroup was talking about how fast their kids grow up.
One kid is walking at 8 months old (way too early!)
I know where those parents are coming from, but
I sat there thinking about complaining
HOW BLOODY LONG IT'S TAKING FOR MY KID TO GROW UP
I didnt make that statement,
I thought it would be met with crickets....chirp, chirp chirp........
Or worse
someone saying "oh but you get to enjoy each stage",
blahh gag.
Tuesday, February 14, 2012
The boys loo and tears
Another hellish morning for Cy. Poor thing so anxious about preschool that he wouldn't come out is bedroom when he woke up this morning. He started crying before we left home and was a mess as we walked into preschool. Oh my Lordy SO stressful. Thankfully I got a call to say he had settled about 30 minutes after I left but they didn't ring me until he had been there 2.5 hours and I had been crying all that time!
Little Owey is finally better after suffering a fever over 39 for 4 days, he hardly ate or drank during this time and kept grabbing his mouth so I think it was a sore throat. He is back to his old self now and we are all catching up on lost sleep. He has been toilet training the past few days, I have to take him every 2 hours but occasionally he will tell me he has to go or that he has gone already - in his pants!
Little Owey is finally better after suffering a fever over 39 for 4 days, he hardly ate or drank during this time and kept grabbing his mouth so I think it was a sore throat. He is back to his old self now and we are all catching up on lost sleep. He has been toilet training the past few days, I have to take him every 2 hours but occasionally he will tell me he has to go or that he has gone already - in his pants!
Anyway I think it is going ok, the only thing is he likes to watch his pee, so he leans right back on the seat so it goes right up in the air and lands not in the bowl but on the floor in front of the toilet, blahh. With all this peeing on the floor our bathroom smelt like the boys school toilets I was scrubbing and washing with our regular bathroom cleaner and couldn't shift THAT smell (which apparently none of the males in the house can smell) but now I found a great natural product that eats proteins it's actually designed for boys loos ! Now the bathroom smells flowery and sweet!
Still i am not sure How to discourage him from peeing on the floor in the first place ? Maybe I will just have to wait until later when we teach him to go standing up. BOYS!
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