We went to visit the class that the school district would like Callum to attend after the Easter break. We were already 99% sure that we were going to disagree with the placement (a special education class with very limited contact with typical peers) but decided that we'd go and have a look anyway just so we could make an informed choice.
We got there for circle time: 6 special needs kids (4 of whom have 1 on 1 aides) and 2 typical peers who come in just for circle and snack time. I liked the teacher and what she was trying to do but half the kids were just not engaged and one spent at least half the time crying. I know some kids have behavioural issues and they have just as much need for an appropriate education but from a selfish standpoint I just can't see Callum in that class. If someone is crying in that way then Callum would not be able to concentrate on the class at all, he has huge amounts of empathy and would be wanting to comfort the other child rather than learn. I just don't see that as being his least restrictive environment.
Now here's the petty part, after circle time is snack time. The kids all wash their hands and then sit at a little table where they can choose 3 things from a snack box. I was astounded at the choices they had - m&m's, chocolate cookies, pringles, Cheetos (for UK people these are cheesy corn crisps that turn your fingers yellow because they have so much colouring), jellybeans, fruit loops (multi coloured kids cereal), some kind of boiled sweet type lollipop thing and other equally unhealthy foods. The one healthy food was popcorn which should be avoided by kids Callum's age because it's a choking hazard. Callum will be occasionally eat chocolate and cookies but they're giving this to the kids every single day! I get that they want to motivate the kids to speak and make choices but for crying out loud you can still offer healthy stuff that tastes good. How can you expect kids to develop healthy eating habits when this is what you offer them.
Needless to say we officially said no to the placement so now we have to wait and see what the next option will be.
Thursday, March 30, 2006
Disneyland
We took the kids to Disneyland last Sunday and we had so much fun.
I'd asked a few other parents for advice and a couple of people told me about the guest assist pass which is for visitors who need extra assistance. At first I balked at getting one as I didn't think Callum's needs were particularly different than any other 3 year olds needs. I'm always wary because I want Callum to be treated like typical children and it felt a bit like I would be taking advantage.
In the end we decided to get the pass, it only took a couple of minutes and then we had a pass that said it classed Callum's stroller as his wheelchair. I was still a little dubious but decided to just go with it and see what happened.
This was our first time and Disneyland and I had no idea that the lines (even for the little kid rides) could get so long, and you can not take strollers into the line! Callum can walk but he gets tired quite easily and he would not have been able to stand still in a line for 15+ minutes - he has a tendency to wander and does not really get the concept of waiting. So once I realised how everything was laid out we decided that we'd make full use of the pass as without it we would not have had a particularly enjoyable time. We still waited for rides but Callum could wait in his stroller and we waited a maximum of 10 minutes.
The best bit for Callum was meeting Minnie Mouse. he'd never even heard of the character before we went to Disney but by the end of the visit was besotted. The cast member at Minnie's house caught sight of the guest assist pass and asked Callum if he wanted to say hello to Minnie, Callum immediately said yes and got a big grin on his face. We were taken into Minnie's house (Minnie was doing quick meet and greets with a photo opportunity outside her front door) and Callum got a little private audience. Minnie came and sat next to him on her sofa and he just threw his arms around her and gave her a huge hug. They interacted a little, then photo time and another huge hug. Callum couldn't stop talking about Ninnie for the rest of the day and when he saw her in the parade he blew her a big kiss.
Click on a picture to see it in a larger size
I'd asked a few other parents for advice and a couple of people told me about the guest assist pass which is for visitors who need extra assistance. At first I balked at getting one as I didn't think Callum's needs were particularly different than any other 3 year olds needs. I'm always wary because I want Callum to be treated like typical children and it felt a bit like I would be taking advantage.
In the end we decided to get the pass, it only took a couple of minutes and then we had a pass that said it classed Callum's stroller as his wheelchair. I was still a little dubious but decided to just go with it and see what happened.
This was our first time and Disneyland and I had no idea that the lines (even for the little kid rides) could get so long, and you can not take strollers into the line! Callum can walk but he gets tired quite easily and he would not have been able to stand still in a line for 15+ minutes - he has a tendency to wander and does not really get the concept of waiting. So once I realised how everything was laid out we decided that we'd make full use of the pass as without it we would not have had a particularly enjoyable time. We still waited for rides but Callum could wait in his stroller and we waited a maximum of 10 minutes.
The best bit for Callum was meeting Minnie Mouse. he'd never even heard of the character before we went to Disney but by the end of the visit was besotted. The cast member at Minnie's house caught sight of the guest assist pass and asked Callum if he wanted to say hello to Minnie, Callum immediately said yes and got a big grin on his face. We were taken into Minnie's house (Minnie was doing quick meet and greets with a photo opportunity outside her front door) and Callum got a little private audience. Minnie came and sat next to him on her sofa and he just threw his arms around her and gave her a huge hug. They interacted a little, then photo time and another huge hug. Callum couldn't stop talking about Ninnie for the rest of the day and when he saw her in the parade he blew her a big kiss.
Click on a picture to see it in a larger size
Wednesday, March 29, 2006
Confirmed Diagnosis
We had Callum's follow up with the hematologist today and it's confirmed that Callum does have Autoimmune neutropenia. The good news is that he should just grow out of it in the next couple of years. He will need blood work every 6 months just to keep an eye on it but we don't need to go back to the hematologist unless there's a problem. We do have to keep an eye out for fevers and get blood work done as soon as his temperature goes above 101.5. If he has a fever and his ANC is 500 or less then he'll need to be admitted to the hospital for antibiotics, his last ANC was 1100 and is slowly going up so hopefully he'll grow out of it soon and wont have any problems.
On a sad note today is my mum's last day with us here in California, she's off back to England tomorrow. We've really enjoyed having her staying with us and the boys are going to miss her tremendously. She's been a great help over the last couple of months and we're looking forward to her next visit.
On a sad note today is my mum's last day with us here in California, she's off back to England tomorrow. We've really enjoyed having her staying with us and the boys are going to miss her tremendously. She's been a great help over the last couple of months and we're looking forward to her next visit.
Monday, March 27, 2006
Swimming
Callum has been taking swimming lessons since he was a little over a year old. It's one of his favourite things to do and he works really hard at it. At the beginning he had a floatie (arm band's in UK speak) on each arm and fins (flippers) on his feet. Over the last 2 years they first slowly deflated the floaties, then removed the floaties and now he's swimming with just 1 fin and a floatie on his leg.
His first diaper after swimming lesson is always huge, because he's so busy smiling, laughing and talking that he forgets to close his mouth and swallows huge amounts!
Here's my little water baby (click on a picture for a bigger version)
His first diaper after swimming lesson is always huge, because he's so busy smiling, laughing and talking that he forgets to close his mouth and swallows huge amounts!
Here's my little water baby (click on a picture for a bigger version)
Wednesday, March 22, 2006
3 years ago today
Three years ago today Callum was 3 hours old. We'd been the happiest that we'd ever been and the saddest that we'd ever been. We were still trying to digest the news that he probably had Down syndrome and were frantically looking at all the markers that had been pointed out and trying to explain them away.
fast forward to today.
Callum woke up at 6am shouting "da da daddy". He went down stairs and discovered presents, presents and more presents. He loved the Shrek and Sesame Street wrapping paper (probably more than some of the presents). He's been singing Happy Birthday to you all morning and got to eat chocolate brownies for breakfast. At school he'll play with his friends, take a nap and then time for his favourite music class. Once class is over it'll be time for cake and more singing of Happy Birthday. Tonight he has his favourite dinner of fries and chick nuggets followed by a Shrek cake. Three year ago I never thought that life would be so normal :-)
Happy 3rd birthday my dear sweet Callum, I wouldn't change you for the world.
fast forward to today.
Callum woke up at 6am shouting "da da daddy". He went down stairs and discovered presents, presents and more presents. He loved the Shrek and Sesame Street wrapping paper (probably more than some of the presents). He's been singing Happy Birthday to you all morning and got to eat chocolate brownies for breakfast. At school he'll play with his friends, take a nap and then time for his favourite music class. Once class is over it'll be time for cake and more singing of Happy Birthday. Tonight he has his favourite dinner of fries and chick nuggets followed by a Shrek cake. Three year ago I never thought that life would be so normal :-)
Happy 3rd birthday my dear sweet Callum, I wouldn't change you for the world.
Friday, March 17, 2006
Evaluations
Callum has gone through 6 different evaluations over the last 3 weeks and has been co-operative, engaging and happy through the majority of them. He's been watched by about 8 different adults, all strangers to him, who write their notes and ask him to perform and then write some more notes. He's climbed stairs, ridden a tricycle, drawn circles, done puzzles and stacked blocks.
He's been asked to do things that he doesn't know how to do - sort into colours, cut a piece of paper with scissors, imitate drawing a line and catching a ball. With all of these things he's tried his hardest, he's looked at the therapists for approval, he's done what he thinks is right and we've said "good trying Callum" but all the while my heart is hurting.
I've watched his pudgy little fingers try and do puzzle that I know is too difficult for him, when he puts the piece in the wrong place and smiles and claps I just want to pick him up and smother him with love because I know all those who are watching are making their notes and adding to the list of things that he can not do. I want to tell them about all the things he can do, how he goes to comfort kids who are crying, how he gives the sweetest hugs right before he falls asleep, how he gets so much pleasure out of dancing and singing to his favourite videos and how he makes us smile. Unfortunately there aren't any check boxes for these things.
He's been asked to do things that he doesn't know how to do - sort into colours, cut a piece of paper with scissors, imitate drawing a line and catching a ball. With all of these things he's tried his hardest, he's looked at the therapists for approval, he's done what he thinks is right and we've said "good trying Callum" but all the while my heart is hurting.
I've watched his pudgy little fingers try and do puzzle that I know is too difficult for him, when he puts the piece in the wrong place and smiles and claps I just want to pick him up and smother him with love because I know all those who are watching are making their notes and adding to the list of things that he can not do. I want to tell them about all the things he can do, how he goes to comfort kids who are crying, how he gives the sweetest hugs right before he falls asleep, how he gets so much pleasure out of dancing and singing to his favourite videos and how he makes us smile. Unfortunately there aren't any check boxes for these things.
Tuesday, March 14, 2006
MRI Results
We finally had the neurosurgeon consult today and we all got to give a big sigh of relief because everything was normal, he's just got a big old head.
The doctor was great, Kieran was great, everything was great (apart from the dead fish floating in the fish tank).
Whewww...
The doctor was great, Kieran was great, everything was great (apart from the dead fish floating in the fish tank).
Whewww...
Monday, March 13, 2006
Friday
Kieran was great on Friday, we had to be at the hospital at 9:30 to register and then his MRI was scheduled at 11am. He didn't complain at all about the waiting around, just ran up and down kicking his ball, playing with his car and making everyone smile. His MRI got delayed until almost 12:30 so that was 18 hours without food and 4 hours since his apple juice. The nurse was great and found us a little quiet waiting area so that Kieran could watch his Sesame Street DVD and run around safely. We took him into the MRI room and he looked so tiny next to all that equipment. They tried to put an IV in his arm for the anaesthetic and he didn't cry at all, unfortunately it wouldn't stay in and the only place they could find a vein was in his foot. He really cried when they put the needle in his foot, I wanted to make it all better but all I could do was hold his hand, stroke his head and tell him it would all be OK. They pushed the medicine and he was asleep in seconds, I wiped the tears from his face, gave him a kiss and left him with his blankie. Mark & I went back to the waiting room and I couldn't hold the tears in any longer, I knew he was going to be fine but I hated seeing him in pain.
A little over an hour later (I had no idea an MRI took that long) we were taken back and there was Kieran fast asleep on a big adult sized gurney. They whisked us down corridors and up elevators and after completely losing track of where we were we emerged back in the main hospital building in the recovery room. Kieran started to come round almost immediately but was in a real grump, which isn't very surprising. I asked the nurse if they had crackers and juice and she came back with Oreo cookies and apple juice. Kieran was in heaven. Oreo cookie in each hand, chocolate all over his face and apple juice just a sip of the straw away. He still wasn't sure whether to laugh or cry so he did a little bit of both. All the nurses thought he was the cutest thing ever and they all wanted a photo of his chocolate face but none of us had a camera.
We made a quick stop at the neurosurgeons office to check when his appointment was (it was supposed to be the same day as the MRI but things got a little mixed up), more ooing and aahhing over Kieran's little chocolatly face and then home time. We go back tomorrow to get the results.
A little over an hour later (I had no idea an MRI took that long) we were taken back and there was Kieran fast asleep on a big adult sized gurney. They whisked us down corridors and up elevators and after completely losing track of where we were we emerged back in the main hospital building in the recovery room. Kieran started to come round almost immediately but was in a real grump, which isn't very surprising. I asked the nurse if they had crackers and juice and she came back with Oreo cookies and apple juice. Kieran was in heaven. Oreo cookie in each hand, chocolate all over his face and apple juice just a sip of the straw away. He still wasn't sure whether to laugh or cry so he did a little bit of both. All the nurses thought he was the cutest thing ever and they all wanted a photo of his chocolate face but none of us had a camera.
We made a quick stop at the neurosurgeons office to check when his appointment was (it was supposed to be the same day as the MRI but things got a little mixed up), more ooing and aahhing over Kieran's little chocolatly face and then home time. We go back tomorrow to get the results.
Thursday, March 09, 2006
Practice what you Preach
We've really been stressing sharing with the boys recently and they're getting pretty good at it. Callum will carry snacks in for both of them and give one to Kieran and Kieran will sometime even share his pacifier, which is a huge deal for Kieran.
We were at a fast food restaurant recently (a treat for the kids a couple of times a month and a night off from cooking and cleaning up for me) and the kids were happily eating fish & chips and chicken nuggets when I decided that I'd have a chocolate milkshake, of course they both asked for a taste. Callum took a sip, pulled a face and didn't ask for any more. Kieran took a sip, got a big grin on his face and immediately asked for more, a couple more sips and then I wanted my milkshake back! Kieran look disgruntled and very clearly said "share". I didn't expect him to turn the sharing lesson back on me.
Kieran has his sedated MRI and neurosurgeon consult tomorrow. It'll be a long day but I'll be glad to have another thing knocked of our list. His pediatrician said that she'd be very very surprised if anything was wrong so I'm not stressing about it too much.
We were at a fast food restaurant recently (a treat for the kids a couple of times a month and a night off from cooking and cleaning up for me) and the kids were happily eating fish & chips and chicken nuggets when I decided that I'd have a chocolate milkshake, of course they both asked for a taste. Callum took a sip, pulled a face and didn't ask for any more. Kieran took a sip, got a big grin on his face and immediately asked for more, a couple more sips and then I wanted my milkshake back! Kieran look disgruntled and very clearly said "share". I didn't expect him to turn the sharing lesson back on me.
Kieran has his sedated MRI and neurosurgeon consult tomorrow. It'll be a long day but I'll be glad to have another thing knocked of our list. His pediatrician said that she'd be very very surprised if anything was wrong so I'm not stressing about it too much.
Wednesday, March 08, 2006
Meet the Fockers
Kieran has lots of kids in his class and he's really into saying their names, it's the cutest thing hearing him trying to say Caroline (lalaline), Ryan (ryry) and Anna but the absolute best is Axel....
For those of you who've seen the movie Meet The Fockers you'll know exactly what this sounds like. For those that haven't seen the movie, what he says in his 'best butter wouldn't melt in his mouth' little boy voice is ..... "Asshole"
I know we shouldn't laugh but it's absolutely hilarious, I hope his teachers don't think that we've been teaching him naughty words.
For those of you who've seen the movie Meet The Fockers you'll know exactly what this sounds like. For those that haven't seen the movie, what he says in his 'best butter wouldn't melt in his mouth' little boy voice is ..... "Asshole"
I know we shouldn't laugh but it's absolutely hilarious, I hope his teachers don't think that we've been teaching him naughty words.
Monday, March 06, 2006
Bits & Pieces
Kieran has learnt how to give kisses and hugs. He's always been a snuggly baby but now he'll purposefully wrap his arms around your neck and goes "aaahhhh" which is what I say when I'm giving him big cuddles. He gave his first ever proper kiss to Callum and then followed it up with one each for me and Mark. I love this age :-)
Callum is still Shrek obsessed but now we're turning it to our advantage. Callum struggling while we're trying to get him in his car seat is stopped immediately by saying that Princess Fiona sits in her car seat. Callum doesn't want to brush his teeth - well that all changes when we tell him that Shrek likes to brush his teeth. Thank goodness for Shrek & Fiona !
My mum is still shadowing Callum at school so she brings home lots of little stories which is great. One little boy who is very quiet and shy has recently started playing with Callum a lot and according to his mum talks about Callum at home. She was most surprised when last week he said he "wanted Callum's head", we think this means that he wanted to be like Callum - very happy and smiley and full of fun.
Callum is still Shrek obsessed but now we're turning it to our advantage. Callum struggling while we're trying to get him in his car seat is stopped immediately by saying that Princess Fiona sits in her car seat. Callum doesn't want to brush his teeth - well that all changes when we tell him that Shrek likes to brush his teeth. Thank goodness for Shrek & Fiona !
My mum is still shadowing Callum at school so she brings home lots of little stories which is great. One little boy who is very quiet and shy has recently started playing with Callum a lot and according to his mum talks about Callum at home. She was most surprised when last week he said he "wanted Callum's head", we think this means that he wanted to be like Callum - very happy and smiley and full of fun.
Subscribe to:
Posts (Atom)
