I THINK Emily's ill (maybe).
I don't know for sure as she can't communicate it to me. It's a bit like trying to diagnose a family pet - she's got a runny nose, screams when she eats and cries when she drinks, but she can't tell me if there's anything specifically wrong. She's not hot, per se, but she is warm and looks for cuddles when she's crying (which is quite often).
My 10 cent diagnosis is she has a sore throat. She can't tell me this, so I have to do my best Sherlock Holmes impression. Toast, which is rough, set her off when she had a bite. Apple juice, which isn't rough was OK. She did crack a mental when I proposed to dribble raisins on her cereal though... what the hell is that all about?
Again, she could either be ill with a sore throat (to go with the runny nose) or she could just be cranky and indignant.
Either way, it didn't stop her spilling a cup of apple juice on my parents' leather sofa. At least I could communicate to HER how annoyed I was at that.
Friday, 26 August 2011
Friday, 19 August 2011
Emily's communication
Emily's starting to make her intentions known, verbally which is good.
She's able to let us know she doesn't like something, which is better than nothing.
If we're reciting a song or a story to her and she's had enough, she'll start telling us "shh! shh! shh!". Likewise, she's started saying what sounds like "neesa" which we haven't fully understood yet, but believe it to be in the same vein - i.e. I don't like this and want it to stop.
Em's still communicating with more grunts than words, but telling us what she doesn't want is a step toward better communication.
She's able to let us know she doesn't like something, which is better than nothing.
If we're reciting a song or a story to her and she's had enough, she'll start telling us "shh! shh! shh!". Likewise, she's started saying what sounds like "neesa" which we haven't fully understood yet, but believe it to be in the same vein - i.e. I don't like this and want it to stop.
Em's still communicating with more grunts than words, but telling us what she doesn't want is a step toward better communication.
Saturday, 13 August 2011
Holy Crap!
We had quite a peaceful plane ride to Canada, which is nice. Em CAN be quite moody and unsettled sometimes when she flies.
There was ONE incident that was quite shocking. I took her to the loo to change her nappy, and there was only wee. I thought she'd like a baby wipe down the back to freshen up and as I did so, she opened the backdoor floodgates.
It was messy!
You can't really stop a child from pooping at the best of times, especially if they're standing on an air plane toilet seat while you're trying to change them. To say it went everywhere is not an exaggeration. I managed to clean everything up, but there were casualties. We had to spray her jeans with perfume to mask the smell and her sock was... well, she was standing in her bum chocolate, so her sock was DEFINITELY a casualty.
Apart from that stinker of an incident though, the flight went off without a hitch! We got our push chair just after we got off the plane and were able to wheel Em around while we waited FOR EVER for our bags, which is good because when we finally went through and met Nana, it was well past midnight UK time.
There was ONE incident that was quite shocking. I took her to the loo to change her nappy, and there was only wee. I thought she'd like a baby wipe down the back to freshen up and as I did so, she opened the backdoor floodgates.
It was messy!
You can't really stop a child from pooping at the best of times, especially if they're standing on an air plane toilet seat while you're trying to change them. To say it went everywhere is not an exaggeration. I managed to clean everything up, but there were casualties. We had to spray her jeans with perfume to mask the smell and her sock was... well, she was standing in her bum chocolate, so her sock was DEFINITELY a casualty.
Apart from that stinker of an incident though, the flight went off without a hitch! We got our push chair just after we got off the plane and were able to wheel Em around while we waited FOR EVER for our bags, which is good because when we finally went through and met Nana, it was well past midnight UK time.
Monday, 1 August 2011
Travel to Dragonflies
Got a letter through the post this very morning from Sutton council saying they've accepted our claim and Emily will be provided transport to and from school.
This is terrific news and takes a burden off Sue's and my shoulders. However, we're not out of the woods yet. We need to ensure the eventual times work for Helen or we're going to still be in trouble as the paperwork provided clearly states they can't really change the times the child is picked up as the school run works pretty close to the bone.
Fingers crossed we get over this last remaining hurdle then.
This is terrific news and takes a burden off Sue's and my shoulders. However, we're not out of the woods yet. We need to ensure the eventual times work for Helen or we're going to still be in trouble as the paperwork provided clearly states they can't really change the times the child is picked up as the school run works pretty close to the bone.
Fingers crossed we get over this last remaining hurdle then.
Thursday, 28 July 2011
Who's child is this?
Today I picked Emily up from Fennies and she was in high spirits. She was quite warm and I was told she had a bit of a temperature.
Gotta keep mum with this place or Emily gets banned for 48 hours at a time at the first hint of illness. I said I put it down to warm, clammy weather, not the stream of obviously infected green snot coming out her nose.
When it came time to leave, I mentally prepared myself for Emily to ignore everyone and leave the room... while everyone said goodbye... and I was left looking the lump.
Tonight, not only did Emily SAY goodbye, she walked up to each of the minders (are they minders? teachers? nursery workers?) and said buh-bye and waved her hands at them.
I just stood there gobsmacked, thinking who's child is this? Where's the one I dropped off this morning who wouldn't know a social convention if it crept up behind her introduced itself and asked for the time.
Every now and then I catch these glimpses of what I hope Dragonflies will be able to nurture out of our little Em.
There is hope once again for the future, a future I haven't said buh-bye to yet.
Gotta keep mum with this place or Emily gets banned for 48 hours at a time at the first hint of illness. I said I put it down to warm, clammy weather, not the stream of obviously infected green snot coming out her nose.
When it came time to leave, I mentally prepared myself for Emily to ignore everyone and leave the room... while everyone said goodbye... and I was left looking the lump.
Tonight, not only did Emily SAY goodbye, she walked up to each of the minders (are they minders? teachers? nursery workers?) and said buh-bye and waved her hands at them.
I just stood there gobsmacked, thinking who's child is this? Where's the one I dropped off this morning who wouldn't know a social convention if it crept up behind her introduced itself and asked for the time.
Every now and then I catch these glimpses of what I hope Dragonflies will be able to nurture out of our little Em.
There is hope once again for the future, a future I haven't said buh-bye to yet.
Sunday, 17 July 2011
Emily's arse size (and other Eureka moments)
We were out shopping this afternoon in rainy Croydon and being the people who know Emily best, took ONE single extra nappy with us.
While waiting for our food to be served in the M&S hot food area, we discovered that Emily had let loose the bowels of hell. One scream-filled change later and we enjoyed our lunch, unabated.
As we were ready to go, Emily had that look on her face that Joey Tribbiani refers to as "fart acting" and we refer to as "poo making". It was with heavy heart that we realised Emily decided to top and tail her meal with a load.
Again, as mentioned, we brought with us ONE nappy. This was used pre-lunch.
Nappy-less, we decided to chance that the baby changing facilities, on the other side of the shopping centre, had a vending machine we could top up our depleted nappy supplies with.
They did.
However, Emily's arse had other ideas. By the time we got to the changing room, Emily's full nappy had emptied itself someone down the inside leg of her trousers. By the time we peeled her clothes off her she had an unholy "tan" down her legs, complete with peas and bits of carrots.
While I vended a needed nappy, Sue ran off and bought a new pair of trousers.
Later we ruminated on the hell we endured and surmised - in a Eureka moment - that while Emily fit the WEIGHT of a size 6 nappy (which is what she had graduated to) her arse area (hips, etc.) was probably not large enough to fill that size completely, thus with gaping holes all the lovely filling could flow down her leg.
This hypothesis was further proven as the vended nappy was a snug size 4 and when Emily backend let loose yet once again, the explosion was amply contained.
We trundled into Mothercare and bought a crate of nappies size 5, as we have now figured this Eureka moment could serve to alleviate further disruptive explosions and subsequent leg drippings.
The things we learn as parents...
While waiting for our food to be served in the M&S hot food area, we discovered that Emily had let loose the bowels of hell. One scream-filled change later and we enjoyed our lunch, unabated.
As we were ready to go, Emily had that look on her face that Joey Tribbiani refers to as "fart acting" and we refer to as "poo making". It was with heavy heart that we realised Emily decided to top and tail her meal with a load.
Again, as mentioned, we brought with us ONE nappy. This was used pre-lunch.
Nappy-less, we decided to chance that the baby changing facilities, on the other side of the shopping centre, had a vending machine we could top up our depleted nappy supplies with.
They did.
However, Emily's arse had other ideas. By the time we got to the changing room, Emily's full nappy had emptied itself someone down the inside leg of her trousers. By the time we peeled her clothes off her she had an unholy "tan" down her legs, complete with peas and bits of carrots.
While I vended a needed nappy, Sue ran off and bought a new pair of trousers.
Later we ruminated on the hell we endured and surmised - in a Eureka moment - that while Emily fit the WEIGHT of a size 6 nappy (which is what she had graduated to) her arse area (hips, etc.) was probably not large enough to fill that size completely, thus with gaping holes all the lovely filling could flow down her leg.
This hypothesis was further proven as the vended nappy was a snug size 4 and when Emily backend let loose yet once again, the explosion was amply contained.
We trundled into Mothercare and bought a crate of nappies size 5, as we have now figured this Eureka moment could serve to alleviate further disruptive explosions and subsequent leg drippings.
The things we learn as parents...
Saturday, 16 July 2011
Paediatrician meeting
After what seems like a lifetime - and for Emily it was a large chunk - we finally had our Paediatrician meeting yesterday.
Sod's law dictated that, having waited 8 months, I would have to be on-site at a client meeting I couldn't get out of. The only silver lining to that cloud is Emily will have more Paediatric care once she starts at Dragonflies, so this wasn't the one-off it could potentially have been.
Anyway, on with the news.
Emily wasn't tested for Autism. Again, there's a few tests they could do, including brain scans, etc., but the treatment wouldn't change, so there's really no need to put her through that stress.
While Emily's not officially a card carrying Autism Spectrum Disorder (ASD) member, the doctor did say she was showing behaviours akin to someone with it. Sometimes you don't have to have all the facts to make an educated leap of faith. I guess it's sort of like saying, "I didn't SEE you drink 10 beers, but you are showing behaviours akin to someone who's drunk."
The doctor was concerned from the off, apparently, as Emily went up and gave her a hug - a complete stranger. At this point in her life, she should be wary of strangers, even though they're "friends you haven't met yet" (or whatever those cheesy greeting cards say).
I think the most important thing I got from Sue relaying the notes was that we do NOT overuse the word "no", else it will lose all meaning. It should be reserved for actions that would put her in harm's way. Almost like we need to say "No... priority one!", as opposed to when she's turning her milk upside down on the carpet or other mischievous activities.
This includes having her hands up to her ears. We need to let this one go, as it's most likely a defence mechanism and not her odd version of sucking a thumb. If the hands go up, she's in distress and forcing her NOT to do it only reinforces some bad behaviours.
One action point we can do is join Emily when she stares off into space, looking at the trees. We can then gently coax her into doing something else with the powers of distraction.
All in all, I get the sense that we're going to have to face facts sooner than later, but the doctor was also optimistic that Dragonflies will help her immeasurably. I don't think she'll ever be 100% non-ASD but hopefully with all this support and the strategies we're learning and implementing we can get her to a place where she can function as a non-descript drone in Sector 7G of some faceless corporation somewhere in the world... i.e. normal.
Sod's law dictated that, having waited 8 months, I would have to be on-site at a client meeting I couldn't get out of. The only silver lining to that cloud is Emily will have more Paediatric care once she starts at Dragonflies, so this wasn't the one-off it could potentially have been.
Anyway, on with the news.
Emily wasn't tested for Autism. Again, there's a few tests they could do, including brain scans, etc., but the treatment wouldn't change, so there's really no need to put her through that stress.
While Emily's not officially a card carrying Autism Spectrum Disorder (ASD) member, the doctor did say she was showing behaviours akin to someone with it. Sometimes you don't have to have all the facts to make an educated leap of faith. I guess it's sort of like saying, "I didn't SEE you drink 10 beers, but you are showing behaviours akin to someone who's drunk."
The doctor was concerned from the off, apparently, as Emily went up and gave her a hug - a complete stranger. At this point in her life, she should be wary of strangers, even though they're "friends you haven't met yet" (or whatever those cheesy greeting cards say).
I think the most important thing I got from Sue relaying the notes was that we do NOT overuse the word "no", else it will lose all meaning. It should be reserved for actions that would put her in harm's way. Almost like we need to say "No... priority one!", as opposed to when she's turning her milk upside down on the carpet or other mischievous activities.
This includes having her hands up to her ears. We need to let this one go, as it's most likely a defence mechanism and not her odd version of sucking a thumb. If the hands go up, she's in distress and forcing her NOT to do it only reinforces some bad behaviours.
One action point we can do is join Emily when she stares off into space, looking at the trees. We can then gently coax her into doing something else with the powers of distraction.
All in all, I get the sense that we're going to have to face facts sooner than later, but the doctor was also optimistic that Dragonflies will help her immeasurably. I don't think she'll ever be 100% non-ASD but hopefully with all this support and the strategies we're learning and implementing we can get her to a place where she can function as a non-descript drone in Sector 7G of some faceless corporation somewhere in the world... i.e. normal.
Thursday, 14 July 2011
Claiming travel to Dragonflies and delusions
 |
| Who goes shopping in just a nappy? |
Sometimes I think I'm deluded about Emily. "Learning difficulties" is a nice tidy, fixable not too problematic issue. I don't know if I feel the same about "Autism", regardless of how mild.
It's really hit me these past couple of days as Sue and I have discussed and put together a claim to get transportation for Emily to Dragonflies. If we get it, a special bus will pick her up and drop her off, which is handy as neither Sue nor I could guarantee to get Emily to school everyday.
We had to fill out a form making Emily sound like some brain-dead spak. Saying things like "she can't get in or out of a car by herself" (which is - sadly - mildly true), and "she is a risk to herself" if put on public transport. (I would argue, though, that there aren't that many 3 year olds with the mentally acuity to ride public transport alone). The fact that she's still in (slightly ill-fitting) nappies is also a mild worry... but that's a tale for another day.
I think the worst thing Sue and I can do is let our positive energy turn negative, and for the most part we are quite optimistic. Optimistic that Dragonflies will help immeasurably; optimistic that Emily will be able to function properly in society; optimistic that one day she WILL ride public transport on her own and not come to harm.
I don't know how much of this is delusion on my part, but I guess come this time next year we'll see how much help Dragonflies actually was. Afterwards, we could always put her on a train by herself and see what happens...
Wednesday, 6 July 2011
Dragonflies parent teacher meet and greet
We had our first meeting tonight at Dragonflies. A sort of pre-induction meeting to get us ready for the new school in mid-September.
It was quite informative, which is always good at these types of things. They went through various aspects of what the children will be doing, what they can offer (things we already knew like musical therapy, occupation therapy and the like) and other sundry things like transport.
The funniest thing is that Emily will have to wear a school uniform come September. It's not that much of a uniform tracky bottoms and a sweatshirt, but it gets her used to wearing one so when she graduates to big school, the clothing will be one less thing she'll have to get used to.
That brought up a question for Sue and I. As Emily is the muckiest mucky muck you'll ever meet, how many uniforms do we buy? One a day, two a day, 3 a week? We settled on 3 for the week, knowing full well we'll probably be seeing them in the wash quite frequently.. or else ban Emily from eating ANYTHING mucky.
They went through quite a bit on parental interaction this evening as well, which was good. There's coffee mornings and home visits and regular meetings that it's highly suggested we attend. There'll also be weekly newsletters and information coming home from the kids.
It really sounds like this is going to be excellent for Emily. We even met her new key worker Mrs. Watson. When we described Emily to her (she talks... sorta. Sings, but doesn't converse) she knew exactly what we were on about. This made me feel quite at ease, and that Emily's issues aren't that rare.
In a way it's going to be strange with Emily starting school in September. She's growing up and it's just the start of a long progression of milestones that signal she's moving away from being my little baby girl... This feeling is obviously tempered by the fact that she's going to get some amazing help and I'm hoping that come this time next year there'll be quite a marked improvement.
Tuesday, 28 June 2011
Taking a breath
Sue had a nice mini-break in Portugal on the weekend which left Emily and I to our own devices. Father - daughter bonding or father utter frustration at child?
Well, it was a mix of both.
We went to an engagement "party" at a pub on Sunday and I spent the entire time chasing Emily and making sure she didn't get up to mischief of one kind or another... and she did. She constantly walked straight out the front door like she knew what she was doing.
It was quite a relaxing feeling leaving really, as I knew she couldn't BUDGE from her car seat the whole way home.
We're also TRYING to sort out this dreaded potty training. Trouble is she just won't tell us when she needs to go - we have to almost be clairvoyant, judging her facial expressions and body language correctly.
Tonight she was doubled over, so I knew a brown loaf was brewing. Sitting her NEAR the potty elicited the usual squeaks and squawks she lets out when she doesn't want to do something. Moments later, her back end smelled worse than Wallington Asda (which is next to a sewage treatment plant and generally smells of it).
Speaking of Asda, we had some father - daughter bonding time there this evening, in between bouts of father CHASING daughter time. Sometimes I think I'm too old to be a father.
Anyway, in between picking out loaves of bread and bags of peppers, Emily decided she wanted to do "whizzies", which is basically me holding her in my arms and spinning around. She looked right into my eyes (a good thing, from our speech and language therapy lessons) and said "one, two, three" at which point I spin us both around. This was met by bit smiles and laughter. Rinse and repeat about 10 times.
When I put her down, she then proceeded to try and do "Ring a Ring a Rosie". Are there less subtle ways for a child to tell a parent they're ready to leave? I don't think so.
Subscribe to:
Posts (Atom)