*more of a flop than a cuddle - but still they feel SO good
Monday, April 25, 2011
Friday, April 22, 2011
Happy ears
We travelled last week to get Owens hearing tested and he passed !!
Actually its better than that he actually registered as hearing low frequency sound for the for time ever - even the audiologist was excited !
Actually its better than that he actually registered as hearing low frequency sound for the for time ever - even the audiologist was excited !
Wednesday, April 20, 2011
Cardiology Review
Okay so its nearly 2 years since Owey's surgery and he has just had his cardiology review - the cardiologist flys up here from Sydney - great not to have to travel for this one.
So we meet with the guy "Dr I." and go inside the consulting room and Owen is all over the place, crawling round and round the room and then standing at the door and saying Bye Bye over and over again then round and round the room again - probably looking for another exit ?!
Meanwhile Dr I. asks me how he is going "he seems very active!!" he sayes looking over at him, and I say "yes well it is his nap time (its 12.15pm, the only appointment I could get) he's getting ratty".
"Do you have any concerns about his growth" he asks and I say "well he was on the 75th percentile on the normal charts at 1 year old and now at 2 years old he has gone down to the 15th (again on the normal charts) should I be worried?" and he sayes "what about on the DS charts" and I say "he has gone from the 95th to the 75th", "well thats not a concern" he sayes. But then he sayes "Anyway you don't want him big" and I say UGH?, sorry, why not??. "You don't want a big teenage boy with Down Syndrome they are difficult to handle" my heart grows suddenly heavy "Parents say oh if only I had known what it meant to have big child with DS" and my heart is on the floor and I don't know what to say because he has painted a picture of my future I don't want to look at.
Then he goes on digging himself in deeper - "Anyway look at you, you are not big, you are medium height and thin, not like some of the mothers that come in here".
At this stage I start to boil over BUT he has me, right where he wants me, because he still has to do the ECHO and he still has to give me the good or bad news on Owens heart and so instead of giving him a piece of my mind I just sit there politely/anxiously waiting for him to start the testing.
I sing to Owen during the ECHO and he lays quietly listening to me and at the end of the check DR I. tells me everything is great and Owen won't need another check up till he is 4 years old. Owen gets off the examination table and starts doing laps again. Dr I has one last comment as we are leaving "Glad I'm not sitting next to him on the flight home"! and I shrug my shoulders at him because I just don't want to humour the man.
Why people like this, so called professionals feel they have any right to make judgements on my family, on Owen, myself and my community (implying that other mothers are overweight) makes me really mad, but I feel so disarmed in front of them because I need their "expertise" to help my son.
Anyway needless to say I so glad that I don't have to see that Dr again for a few years!
So we meet with the guy "Dr I." and go inside the consulting room and Owen is all over the place, crawling round and round the room and then standing at the door and saying Bye Bye over and over again then round and round the room again - probably looking for another exit ?!
Meanwhile Dr I. asks me how he is going "he seems very active!!" he sayes looking over at him, and I say "yes well it is his nap time (its 12.15pm, the only appointment I could get) he's getting ratty".
"Do you have any concerns about his growth" he asks and I say "well he was on the 75th percentile on the normal charts at 1 year old and now at 2 years old he has gone down to the 15th (again on the normal charts) should I be worried?" and he sayes "what about on the DS charts" and I say "he has gone from the 95th to the 75th", "well thats not a concern" he sayes. But then he sayes "Anyway you don't want him big" and I say UGH?, sorry, why not??. "You don't want a big teenage boy with Down Syndrome they are difficult to handle" my heart grows suddenly heavy "Parents say oh if only I had known what it meant to have big child with DS" and my heart is on the floor and I don't know what to say because he has painted a picture of my future I don't want to look at.
Then he goes on digging himself in deeper - "Anyway look at you, you are not big, you are medium height and thin, not like some of the mothers that come in here".
At this stage I start to boil over BUT he has me, right where he wants me, because he still has to do the ECHO and he still has to give me the good or bad news on Owens heart and so instead of giving him a piece of my mind I just sit there politely/anxiously waiting for him to start the testing.
I sing to Owen during the ECHO and he lays quietly listening to me and at the end of the check DR I. tells me everything is great and Owen won't need another check up till he is 4 years old. Owen gets off the examination table and starts doing laps again. Dr I has one last comment as we are leaving "Glad I'm not sitting next to him on the flight home"! and I shrug my shoulders at him because I just don't want to humour the man.
Why people like this, so called professionals feel they have any right to make judgements on my family, on Owen, myself and my community (implying that other mothers are overweight) makes me really mad, but I feel so disarmed in front of them because I need their "expertise" to help my son.
Anyway needless to say I so glad that I don't have to see that Dr again for a few years!
Thursday, April 14, 2011
Is he walking yet?
Is WHEN a person with DS walks important?
Or rather, my question is - If they walk "early" does that mean that their cognitive ability is better? Our Doctor told me it doesn't matter when Owen walks it doesn't indicate anything about his cognitive ability. But as a parent I think it would have been somewhat reassuring if Owen had walked within a typical time frame, say around 18 months as some kids with DS do (and some even earlier). And I found when that time frame slipped away and steps were still a long way off that it hurt me, I was filled with self doubt (had I done enough, the right things blah blah blah). I had dreamed of him walking around the toddler pool in the summer time and helping me in the garden watering the vegies. But Summer has left us now and Autumn has all but come and gone and I've had to keep adjusting my "mental milestone calender". I was so sure he would be walking by winter time because I couldn't imagine another winter with a crawling baby - through frosted grass and wet ickky mud - AGAIN. Now I don't want to take anything away from my beautiful boy he is enjoying taking 4 steps in a row and crash tackling me but there is no way that he will be walking by the end of this month and we just had our first frost I have been a slow learner, Owen will do things in his OWN time not mine and he WILL get there and we WILL enjoy strolling around the garden and watering vegies - I should have thrown out that milestone calender years ago.
so why cling to it?
To be honest I think its the intellectual disability thing, it still scares me and it would have been so reassuring for me if he had walked earlier both from the point of view of having felt like we have done enough for him with regards to therapy and also because it may have given me some hope that cognitively he would do well also. I wrote a post about a woman with DS who lives around the block from us who has her licence and drives a (the get away) car, well her mother stopped me in the shops a few weeks ago and asked me how Owen was doing or rather - Was he walking yet? and when I said No hes still a way off walking she said to me - "oh well Megan walked at 17 months she has always done well", and I deflated like a balloon -pppptpttttttttttttttttth. I am pretty sure that just like in typical people the age at which you walk has nothing to do with our other abilities but this encounter gave me the feeling that it did matter.
Urgggh I don't know sometimes when I write things out like this I see how pathetic my fears are, how shallow and how easily hurt I am. What I want for all of my children is for them to be loving, caring, gentle souls who know right from wrong and who treat others (and themselves) with kindness and respect. Not sure if the age you walk has ANYTHING to do with those qualities but I am pretty confident they have nothing to do with them ......whatsoever.
Or rather, my question is - If they walk "early" does that mean that their cognitive ability is better? Our Doctor told me it doesn't matter when Owen walks it doesn't indicate anything about his cognitive ability. But as a parent I think it would have been somewhat reassuring if Owen had walked within a typical time frame, say around 18 months as some kids with DS do (and some even earlier). And I found when that time frame slipped away and steps were still a long way off that it hurt me, I was filled with self doubt (had I done enough, the right things blah blah blah). I had dreamed of him walking around the toddler pool in the summer time and helping me in the garden watering the vegies. But Summer has left us now and Autumn has all but come and gone and I've had to keep adjusting my "mental milestone calender". I was so sure he would be walking by winter time because I couldn't imagine another winter with a crawling baby - through frosted grass and wet ickky mud - AGAIN. Now I don't want to take anything away from my beautiful boy he is enjoying taking 4 steps in a row and crash tackling me but there is no way that he will be walking by the end of this month and we just had our first frost I have been a slow learner, Owen will do things in his OWN time not mine and he WILL get there and we WILL enjoy strolling around the garden and watering vegies - I should have thrown out that milestone calender years ago.
so why cling to it?
To be honest I think its the intellectual disability thing, it still scares me and it would have been so reassuring for me if he had walked earlier both from the point of view of having felt like we have done enough for him with regards to therapy and also because it may have given me some hope that cognitively he would do well also. I wrote a post about a woman with DS who lives around the block from us who has her licence and drives a (the get away) car, well her mother stopped me in the shops a few weeks ago and asked me how Owen was doing or rather - Was he walking yet? and when I said No hes still a way off walking she said to me - "oh well Megan walked at 17 months she has always done well", and I deflated like a balloon -pppptpttttttttttttttttth. I am pretty sure that just like in typical people the age at which you walk has nothing to do with our other abilities but this encounter gave me the feeling that it did matter.
Urgggh I don't know sometimes when I write things out like this I see how pathetic my fears are, how shallow and how easily hurt I am. What I want for all of my children is for them to be loving, caring, gentle souls who know right from wrong and who treat others (and themselves) with kindness and respect. Not sure if the age you walk has ANYTHING to do with those qualities but I am pretty confident they have nothing to do with them ......whatsoever.
Friday, April 1, 2011
Ready or Not - KAMAKAZIE !
On Monday Owen took one step.
On Tuesday he took two steps
Today Col and I were getting him to walk between us and he took 3 steps !
So I was trying to get it on video, here I am expecting Owen stand up and to walk to his dad but you always have to be ready when there is a KAMIKAZE in the house!!
On Tuesday he took two steps
Today Col and I were getting him to walk between us and he took 3 steps !
So I was trying to get it on video, here I am expecting Owen stand up and to walk to his dad but you always have to be ready when there is a KAMIKAZE in the house!!
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