We're heading off to Spain next week for Amanda and Dave's wedding and Emily is going to be a flower girl.
There's so much about that sentence that fills me with dread.
Thankfully, through various workshops and meetings, we've discovered (and had reinforced) that the prepared parent of an ASD child can (hopefully) circumvent most meltdowns and problems by being prepared.
To this end, Sue bought Emily a book about a flower girl a couple of weeks ago that we've been reading. How much she can equate some badly drawn artwork to a task she's never performed is yet to be seen.
To enable to trip to be less stressful for Em, Sue's also put together a small book outlining what we're doing, where we're going and - crucially for ASD kids - that we're coming back home again.
The goal is to read this book like we would a Dr Seuss or Hairy McLairy book, and hopefully the repetition and the familiar photos will make the actual event of the flight to Spain, the wedding (and flower girling) and the trip home almost stress-free.
One thing we have been remiss about is to get Emily in the habit of wearing headphones. This won't be much of an issue going to Spain as EasyJet won't have any in-flight entertainment. It will be quite imperative to have this sorted on the flight to Oz for the girls in August, as Em will need to be entertained by the TV screen.
Fingers crossed the Spanish holiday goes off without a hitch.
Wednesday, 30 May 2012
Monday, 21 May 2012
Yeah baby
 |
| Austin Powers and his juice. |
The latest in her canon happens when she's upset. Tonight, she was frustrated about having some juice, so came over to me, ripped my hand away from Holly's head (where it was holding her up while I fed her) and proceeded to tell me "Yeah, baby!" in an utterly frenzied, upset manner.
While the intended message, somewhere between "I'm frustrated" and "just gimme the damn juice" was obviously conveyed by Emily, I had to hold back a snicker at her completely misusing such a random term to convey these feelings. It's like tourettes, but instead of swearing she uses random Austin Powers sayings.
Monday, 7 May 2012
Dental irritation
With most four year olds, dental pain would be accompanies with a "Mummy/Daddy (delete as appropriate) my mouth hurts". With Emily, that is not the case. She imbibes and consumes and then screams in pain when the food and/or drink has hit whatever in her mouth is causing her discomfort.
Things came to quite a head last night at dinner as there was more moisture on Em's face (due to tears and the ensuing snot) than in her meal or drink (or fill in other things with fluids... soup?)
We called the trusty NHS Direct to get advice. An Emergency Dental Nurse rang us back around midnight to direct us to Rose Hill today and the emergency NHS Dentist that's working bank holidays (lucky him!)
Long story short, Em managed to open her mouth about a microsecond, but this seemed to be long enough for the dental assistant to either a) see the problem or b) not see it but pretend she did. Either way we got the diagnosis that there's nothing visibly wrong, so it could just be new teeth coming through. There was an additional theory that it was also just an ulcer but we were whisked out of the surgery so quickly we didn't have time to raise this hypothesis. Keys in the door, and jacket on the receptionist told the reason for the hasty hoiking out - lunchtime.
Anyway. We went to the supermarket and bought loads of "tooth friendly" things for lunch and dinner, so Emily enjoyed a lunch of soup and a dinner of my wonderful home-made turkey bolognese (apparently pasta doesn't aggravate whatever the hell her mouth is going through).
Here's hoping the oral discomfort settles down soon. It's going to be quite fun for school and Helen otherwise.
Thursday, 3 May 2012
Early Birds , part 2
We started a course called Early Bird last week. It's put on by the National Autism Society and its meant to help parents learn a bit more about their child and cope with their (the child's) view of the world.
Last week was a bit of a toe dipping exercise, touching on a lot that Sue and I have discovered through Dragonflies sessions and the like.
Tonight we jumped straight in to Communication. It was quite an interesting session and we even have home work!
It made me think about Emily's condition in a slightly different light - as if she's a visitor from another country and can't speak the language. She picks up words and phrases here and there but really has no idea what they mean in context. Kinda reminds me of the Monty Python sketch with the phony foreign dictionaries.
I'm sure "my hovercraft is full of eels" might actually mean something to Emily, but it means Bo Diddly to me.
We also talked about the iceberg method again and discussed that the behaviours you see are only the tip of the iceberg, compared to the symptoms down below.
We're to look at Emily with different eyes over the next week - iceberg-wise as well as dissect her verbal and non-verbal communication.
It's really dawned on Sue and I that as parents of an Autistic child, we're shirking our responsibilities somewhat - this is a full. time. job!
Last week was a bit of a toe dipping exercise, touching on a lot that Sue and I have discovered through Dragonflies sessions and the like.
Tonight we jumped straight in to Communication. It was quite an interesting session and we even have home work!
It made me think about Emily's condition in a slightly different light - as if she's a visitor from another country and can't speak the language. She picks up words and phrases here and there but really has no idea what they mean in context. Kinda reminds me of the Monty Python sketch with the phony foreign dictionaries.
I'm sure "my hovercraft is full of eels" might actually mean something to Emily, but it means Bo Diddly to me.
We also talked about the iceberg method again and discussed that the behaviours you see are only the tip of the iceberg, compared to the symptoms down below.
We're to look at Emily with different eyes over the next week - iceberg-wise as well as dissect her verbal and non-verbal communication.
It's really dawned on Sue and I that as parents of an Autistic child, we're shirking our responsibilities somewhat - this is a full. time. job!
Monday, 23 April 2012
School viewings
Even though Emily has a placement at the school round the corner, if she gets her statement of special needs, we'll be able to get her into one of the two schools in the borough that specialise in needs children.
We went to view one today called Forresters. They apparently focus on more integration than the alternative - Green Wrythe.
The tour was quite eye opening, and we saw the various classrooms - mainstream and base (what they call the special needs children) - as well as the gym, the music room, the base sensory room, the computer room. The only room we didn't get a tour of was the library... which is ironic really.
Sue and I are still confused as to the best steps for Emily going forward. Forresters is better for verbal communicative children, while Green Wrythe is better for kids who are still developmentally stuck - like Emily. However, Sue and I want Emily to come out of her shell and does mild integration provide that better than being with other children who don't talk?
We still need to see Green Wrythe before we make up our minds, and if we DO get a statement and accepted to either of the schools, they can decide whether they accept Emily based on the data they receive as well.
Arghhh.
We went to view one today called Forresters. They apparently focus on more integration than the alternative - Green Wrythe.
The tour was quite eye opening, and we saw the various classrooms - mainstream and base (what they call the special needs children) - as well as the gym, the music room, the base sensory room, the computer room. The only room we didn't get a tour of was the library... which is ironic really.
Sue and I are still confused as to the best steps for Emily going forward. Forresters is better for verbal communicative children, while Green Wrythe is better for kids who are still developmentally stuck - like Emily. However, Sue and I want Emily to come out of her shell and does mild integration provide that better than being with other children who don't talk?
We still need to see Green Wrythe before we make up our minds, and if we DO get a statement and accepted to either of the schools, they can decide whether they accept Emily based on the data they receive as well.
Arghhh.
Friday, 20 April 2012
School choices
I guess everyone's finding out about their school choices this week and Emily was no different.
We're hoping to get a statement for her, thus getting her into specialist classroom at one of two schools in the borough.
However, as a statement isn't guaranteed, we also had to go through the proper "nothing wrong with your child" channels. We have a good school a stone's throw around the corner from us - Stanley Park Infant - which was not only our first choice, but also the school Em got into.
It made both Sue and I quite sad to have to reflect on her special needs and the fact that she won't get the integration with normal children that a normal child would get.
Being around Emily, we tend to forget how behind she is, and things like this just really ram reality down our throats.
Still, she's getting all the help she can, Sue and I are doing what we can, and if she gets a statement, she'll be all the better off for it.
We've been given lemons, so better made lemonade than complain we don't like citrus fruit. (I may have to work on that one).
We're hoping to get a statement for her, thus getting her into specialist classroom at one of two schools in the borough.
However, as a statement isn't guaranteed, we also had to go through the proper "nothing wrong with your child" channels. We have a good school a stone's throw around the corner from us - Stanley Park Infant - which was not only our first choice, but also the school Em got into.
It made both Sue and I quite sad to have to reflect on her special needs and the fact that she won't get the integration with normal children that a normal child would get.
Being around Emily, we tend to forget how behind she is, and things like this just really ram reality down our throats.
Still, she's getting all the help she can, Sue and I are doing what we can, and if she gets a statement, she'll be all the better off for it.
We've been given lemons, so better made lemonade than complain we don't like citrus fruit. (I may have to work on that one).
Thursday, 19 April 2012
Autism and genetics?
Sue has taken Emily this afternoon to a geneticist appointment that was made ages ago.
Someone who gets paid to know what they're talking about suggested that we might want to clear with this professional to ensure that Holly won't become autistic, or at least review the likelihood.
We have since been told that the correlation between autism and genetics (or hereditary genetics anyway) is about as sound as not being to conceive while breastfeeding - i.e. complete hokum. Although, I'd like to explore further the theory that more scientists and uni profs (the "smart people"), etc. have autistic kids than the general population.
Still, the appointment was made, so it's probably worthwhile to see at least what the geneticist has to say on any matter regarding Emily. I'm just quite sure whatever is discussed it won't be about autism... or at least we'll be told that Emily is autistic because Sue and I are really smart.
Someone who gets paid to know what they're talking about suggested that we might want to clear with this professional to ensure that Holly won't become autistic, or at least review the likelihood.
We have since been told that the correlation between autism and genetics (or hereditary genetics anyway) is about as sound as not being to conceive while breastfeeding - i.e. complete hokum. Although, I'd like to explore further the theory that more scientists and uni profs (the "smart people"), etc. have autistic kids than the general population.
Still, the appointment was made, so it's probably worthwhile to see at least what the geneticist has to say on any matter regarding Emily. I'm just quite sure whatever is discussed it won't be about autism... or at least we'll be told that Emily is autistic because Sue and I are really smart.
Monday, 2 April 2012
Holly is home. For good.
 |
| Holly as she is now. At home. |
It's been quite the trying month, starting with Holly's cardiac arrest on the 3rd of March and culminating in her being well enough to be discharged today, albeit with a bevy of drugs and a physio plan.
It's going to take some adjusting to not having the hospital around us. For Sue, Holly and myself it will be that safety net the NHS provides, with doctors and nurses only a raised voice away. For Emily, it will be having her family back in one place - mummy and daddy in the same building, sleeping in the same bed and "the baby" back to disrupt her rule of the roost.
In the last few hours, Emily hasn't been as ambivalent towards Holly as she normally has. We've even got her to give Holly a kiss which she has willingly done. I don't believe this is the start of any great thawing of diplomatic relations yet, but it might at least be a small amount of acceptance on Emily's behalf.
Now with Holly back and the family unit together again, we're about to attempt our next great hurdle - taking Holly on an airplane. We've got a week booked in Northern Ireland. The doctors and nurses see no reason Holly CAN'T go and we have an introductory letter for any hospital or doctor we need to contact outlining the story so far.
Now that Holly has spend 1/3 of her life in a hospital (including her initial birth stint) we're hoping not to have to see the inside of one for a long, long time.
Friday, 23 March 2012
EarlyBird information session for Emily
Sue came last night for the first time since Holly's incident on the 3rd of March. We had scheduled ourselves to go to an information session for an EarlyBird course put on by the National Autistic Society that we want to attend.
For 90 minutes we were able to forget our woes regarding Holly, and remember our woes regarding Emily.
The course is going to encompass 12 weeks, including 8 group sessions and 4 home visits.
From everything we saw last night, we can't get onto the course soon enough.
Monday, 12 March 2012
Incredibly hard times for Holly
As I type this, we've well and truly entered week 2 of Holly being in hospital.
We've reached a few milestones in that time, but the hard fact is - she's still in hospital.
Sue and I have managed to keep people updated on Facebook with daily updates, which has been a Godsend. In the "olden days", we would have had to maintain a list of people to contact and ring round to give them all an update. Now we post on Facebook and watch the "likes" and replies come in, so we can get back to the very necessary job of worrying.
For the uninitiated, and to make a reference in this blog, here are the facts from the last 10 days.
On Saturday 3 March, we were shopping in B&Q and Holly was feeling a bit aggravated. She was in the Bush Baby carrier and Sue was attempting to feed her as we walked around the lighting section. After a few minutes, Holly went quiet so we thought she'd fallen asleep after having a quick drink.
When we got to the car a few minutes later, she was blue and lifeless and her eyes were open, rolling back into her head. I sat in the back with her and called 999, while Sue drove like a woman who's child was about to die, all the way to the local hospital... about 10 minutes away.
On the way, Holly eventually did die in my arms.
Once we got to the hospital it was a mad rush for the resuscitation unit to bring her back to life, which they eventually did. It was touch and go how well she was going to be, but they were eventually able to give us some optimistic news.
The retrieval team from St. Thomas' hospital in Lambeth eventually arrived and whisked Sue, Holly and myself to the PICU ward at Evelina Children's Hospital.
Over the next few days, tests were run to determine if she was ill on that Saturday; drugs were given to help her and her temperature was kept low to keep brain function to a minimum and give it time to recover.
She's been having intermittent seizures which are to be expected given the "insult" (their words) her brain has been dealt and we just have to wait to see what kind of brain damage she'll be left with.
Certain milestones have been reached which we've been told we can view as positive. She had her ventilator removed on Thursday, and she was discharged from ICU on Friday. She's now in the neuro ward in the hospital where the care is not 1 to 1, 24 hours a day, but they are better suited to dealing with children with neurological issues.
This week is going to be a very difficult week as the doctors and nurses play around with drug levels to try and find out which ones and which levels work best for Holly.
All this time, Sue and I have to endure the unknown - will she cry, will she coo, will she focus on us or objects, how much brain damage is there, what is temporary and what is permanent. It's all a guessing game and it's made all that much harder as the only one who can tell us any answers is Holly, and she's going to take time.
Sue and I both feel that our lives are in limbo at the moment and they are. We've received the most incredible support from almost everyone we know. Our friend Mo has given us a bolthole to stay at while we go through this; our other friends have dropped in to see us and Holly and provided us with food and drink to offset the crazy prices at the hospital. The well wishes from people on the internet and stories of other children with epilepsy or similar situations has given us hope that we can help Holly overcome this.
I feel like the entire Internet is rooting for us, which is a bit selfish I guess, as I saw 19 other beds in ICU that needed the love and support we were receiving as well.
We've received one miracle - having our baby come back to life. We're just hoping that lightening can strike twice and Holly recovers from this as much as is possible.
Thank you again to everyone who's got in touch, it's kept us going.
 |
| Holly shortly after being admitted to ICU. |
We've reached a few milestones in that time, but the hard fact is - she's still in hospital.
Sue and I have managed to keep people updated on Facebook with daily updates, which has been a Godsend. In the "olden days", we would have had to maintain a list of people to contact and ring round to give them all an update. Now we post on Facebook and watch the "likes" and replies come in, so we can get back to the very necessary job of worrying.
For the uninitiated, and to make a reference in this blog, here are the facts from the last 10 days.
On Saturday 3 March, we were shopping in B&Q and Holly was feeling a bit aggravated. She was in the Bush Baby carrier and Sue was attempting to feed her as we walked around the lighting section. After a few minutes, Holly went quiet so we thought she'd fallen asleep after having a quick drink.
When we got to the car a few minutes later, she was blue and lifeless and her eyes were open, rolling back into her head. I sat in the back with her and called 999, while Sue drove like a woman who's child was about to die, all the way to the local hospital... about 10 minutes away.
On the way, Holly eventually did die in my arms.
Once we got to the hospital it was a mad rush for the resuscitation unit to bring her back to life, which they eventually did. It was touch and go how well she was going to be, but they were eventually able to give us some optimistic news.
The retrieval team from St. Thomas' hospital in Lambeth eventually arrived and whisked Sue, Holly and myself to the PICU ward at Evelina Children's Hospital.
Over the next few days, tests were run to determine if she was ill on that Saturday; drugs were given to help her and her temperature was kept low to keep brain function to a minimum and give it time to recover.
She's been having intermittent seizures which are to be expected given the "insult" (their words) her brain has been dealt and we just have to wait to see what kind of brain damage she'll be left with.
Certain milestones have been reached which we've been told we can view as positive. She had her ventilator removed on Thursday, and she was discharged from ICU on Friday. She's now in the neuro ward in the hospital where the care is not 1 to 1, 24 hours a day, but they are better suited to dealing with children with neurological issues.
This week is going to be a very difficult week as the doctors and nurses play around with drug levels to try and find out which ones and which levels work best for Holly.
All this time, Sue and I have to endure the unknown - will she cry, will she coo, will she focus on us or objects, how much brain damage is there, what is temporary and what is permanent. It's all a guessing game and it's made all that much harder as the only one who can tell us any answers is Holly, and she's going to take time.
Sue and I both feel that our lives are in limbo at the moment and they are. We've received the most incredible support from almost everyone we know. Our friend Mo has given us a bolthole to stay at while we go through this; our other friends have dropped in to see us and Holly and provided us with food and drink to offset the crazy prices at the hospital. The well wishes from people on the internet and stories of other children with epilepsy or similar situations has given us hope that we can help Holly overcome this.
I feel like the entire Internet is rooting for us, which is a bit selfish I guess, as I saw 19 other beds in ICU that needed the love and support we were receiving as well.
We've received one miracle - having our baby come back to life. We're just hoping that lightening can strike twice and Holly recovers from this as much as is possible.
Thank you again to everyone who's got in touch, it's kept us going.
Subscribe to:
Posts (Atom)