We sat down at Rainbows with a collection of professionals in Emily's life today to talk about her progress and to map out the next year.
All in all, I think everyone involved - head of Rainbows, teacher, and therapists - were quite happy with Em's progress. There's obviously a LONG road ahead, but we're no longer in the starting blocks.
Sue and I got to air some of our concerns that we noted recently with Emily - mainly the flicking of book pages and stabbing her thumb through them and pushing adults out of the room once she'd got what she wanted from them - usually a book or a Richard Scarry video on the TV. Everyone involved is going to work on some strategies to help Emily overcome these "issues".
We have a four point plan that we're going to work against over the next year that will hopefully push toward fulfilling more objectives on her statement of educational needs.
Wednesday, 27 March 2013
Sunday, 3 March 2013
Holly died a year ago today
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| Holly, one year ago. |
I keep thinking sometimes that in a parallel universe somewhere (OK, I've been watching WAY too much Fringe lately) Alternate Sue and I are visiting a grave today and wishing beyond wishing that what happened hasn't actually happened. I can't begin to imagine what our lives would be like, what mental state we'd be in had the alternate reality happened. Thankfully we haven't had to find out.
Not to say the past year has been without it's problems due to this - we've had medications, therapies as well as a diagnosis of Choreoathetosis, which is a type of Cerebral Palsy where there are too many unwanted movements. At the moment, we've been told worst case scenario is wheelchair and never walking - but that's worst case.
It's been a long year and we made it through. I'd like to thank everyone again one year on for their wishes and prayers and I would be utterly remiss not thanking all the professionals and specialists who have been working with us to ensure that Holly's little brain recovers as much functionality as it possibly can.
Friday, 1 March 2013
DLA application
There's nothing more disheartening than filling out an application for Disability Living Allowance for a child. You really need to pour it on thick - without lying - and explain how helpless, and utterly incapable of living a normal constructive life your child actually is. All for a measly couple hundred quid a year.
The problem isn't having to write it down, the problem is seeing a condensed booklet of your child's disability and everything it means all in one place. Reading how they can't brush their teeth, or dress themselves, or cut their own food, or go to the toilet by themselves or even communicate using more than one word.
It really makes your heart sink seeing it all ... written down.
Still, I hope Em's case is strong enough to enable her to continue to receive the scraps from the government.
UPDATE: Sue found a website that publishes a guide to help fill in the DLA. Hopefully this will help us navigate the minefield.
The problem isn't having to write it down, the problem is seeing a condensed booklet of your child's disability and everything it means all in one place. Reading how they can't brush their teeth, or dress themselves, or cut their own food, or go to the toilet by themselves or even communicate using more than one word.
It really makes your heart sink seeing it all ... written down.
Still, I hope Em's case is strong enough to enable her to continue to receive the scraps from the government.
UPDATE: Sue found a website that publishes a guide to help fill in the DLA. Hopefully this will help us navigate the minefield.
Thursday, 14 February 2013
Dancing with my mummy
Today is Emily's first school ball.
From 4.30 - 6p, her school is having a Valentine's Ball and students from Rainbows have to be chaperoned by parents. Sue's looking forward to a bit of a boogie with Em, who will most likely be doing the pogo, as she normally does.
The entry is a paltry £2 per ticket and that includes unlimited drink and a packet of crisps.
I keep wondering if the theme is Enchantment Under the Sea and if Marvin Berry and his band are playing. Probably not to both of those, but it's quite funny that our little 4 year old is going to the ball.
From 4.30 - 6p, her school is having a Valentine's Ball and students from Rainbows have to be chaperoned by parents. Sue's looking forward to a bit of a boogie with Em, who will most likely be doing the pogo, as she normally does.
The entry is a paltry £2 per ticket and that includes unlimited drink and a packet of crisps.
I keep wondering if the theme is Enchantment Under the Sea and if Marvin Berry and his band are playing. Probably not to both of those, but it's quite funny that our little 4 year old is going to the ball.
Tuesday, 12 February 2013
Holly's additional therapy
Sue started Holly's additional therapy today. After a bit of a harrowing start (getting lost, having Emily's nappy on not quite right resulting in "leakage"), so finally found the place and got on with the job at hand.
We were wondering initially whether Holly would benefit from additional therapy, but I think the session put our wonder to rest. Sue regaled me afterwards about what transpired through the session.
Thankfully, BUPA are giving us 6 sessions as part of our membership. After that, we're not sure what happens. The specialist said she'd try to shake the tree from her end to see if the PCT (Primary Care Trust) will help us out (even though our own doctors have said no, as we're already receiving treatment on the NHS - although this kind of treatment is really unavailable anywhere else).
The most gut wrenching thing was Sue telling me Holly might have Cerebral Palsy. I realise those two words separately loosely mean brain damage, and that we're living in cloud cuckoo land if we think she escaped dying with no lasting injuries. It's just when you say terms like "Cystic Fibrosis", "Multiple Sclerosis" or "Cerebral Palsy" it sounds so final. I guess it's the label and the society baggage that comes along with it.
The therapist was not eager to label Holly yet, but said signs points to this being the diagnosis. On a positive note she was really impressed with how bright and alert Holly was and some of her movement were also good.
Here's hoping. Here's hoping.
We were wondering initially whether Holly would benefit from additional therapy, but I think the session put our wonder to rest. Sue regaled me afterwards about what transpired through the session.
Thankfully, BUPA are giving us 6 sessions as part of our membership. After that, we're not sure what happens. The specialist said she'd try to shake the tree from her end to see if the PCT (Primary Care Trust) will help us out (even though our own doctors have said no, as we're already receiving treatment on the NHS - although this kind of treatment is really unavailable anywhere else).
The most gut wrenching thing was Sue telling me Holly might have Cerebral Palsy. I realise those two words separately loosely mean brain damage, and that we're living in cloud cuckoo land if we think she escaped dying with no lasting injuries. It's just when you say terms like "Cystic Fibrosis", "Multiple Sclerosis" or "Cerebral Palsy" it sounds so final. I guess it's the label and the society baggage that comes along with it.
The therapist was not eager to label Holly yet, but said signs points to this being the diagnosis. On a positive note she was really impressed with how bright and alert Holly was and some of her movement were also good.
Here's hoping. Here's hoping.
Friday, 25 January 2013
Can you grow out of autism?
There's a lot of stuff in the press lately about children being able to grow out of autism.
Reading these articles, I can't help but think these people they describe only have their toe dipped into the spectrum, and therefore it's easy enough for them to have a normal enough life with therapy and help to be considered normal.
Whenever I think of Emily grown up, it sends shivers down my spine. I really have no idea what to expect, and sometimes assume everything will be fine and normal, as these reports say. Other times, I imagine her in one of those homes that are always in the news for abuse and it just sends my head spinning.
I have to remain of the conviction that a) we're doing everything that is possible for Emily which will b) lead to her having the best life she can. If that life is straddling the line of normal, I'd see that as us winning the lottery, but I count the odds of that outcome just as high.
Reading these articles, I can't help but think these people they describe only have their toe dipped into the spectrum, and therefore it's easy enough for them to have a normal enough life with therapy and help to be considered normal.
Whenever I think of Emily grown up, it sends shivers down my spine. I really have no idea what to expect, and sometimes assume everything will be fine and normal, as these reports say. Other times, I imagine her in one of those homes that are always in the news for abuse and it just sends my head spinning.
I have to remain of the conviction that a) we're doing everything that is possible for Emily which will b) lead to her having the best life she can. If that life is straddling the line of normal, I'd see that as us winning the lottery, but I count the odds of that outcome just as high.
Tuesday, 22 January 2013
Holly's paediatric check up - therapy and the MMR jab
Went to the paediatrician today for Holly's 6 month check up and all seemed to be in order, which was nice.
The doctor was very impressed with Holly's progress, her ability to do peek-a-boo, her sensory awareness (turning when she heard a noise, etc.), and general progress.
We discussed the hot topics that Sue and I are thinking about right now - further private intense therapy and the MMR jab debate.
While the NHS won't sanction any more than 6 sessions of additional therapy (£70/hr if your curious), we did discuss that we're prepared to pay for it ourselves after the initial "freebies".
We were told that while intense therapy is good on paper, there's a question about how effective it actually would be. If Holly is going to eventually get to 95% normalcy anyway, the therapy may only serve to get her there quicker and then there's no telling how much quicker. It most likely wouldn't serve to provide any additional help.
Regarding the MMR jab, we were regaled with horror stories of the effects of measles (which just sounded ghastly). While the jab itself may not actually cause autism or other illnesses, it may trigger any dormant neuro problems that are not yet detected and allow them to manifest themselves.
Sue and I are quite confident that Holly is a lot less "Emily-like" (for lack of a better term... "austismy"?) than Emily was at this age. A lot more engaged, verbal and alert.
Again, with the benefit of hindsight, all those people telling us we were lucky having such a lovely placid baby in Emily didn't know how utterly wrong they actually were.
We're still really skittish about the MMR jab as it's still not 100% certain that we wouldn't be signing Holly up to a lifelong disability if we did go through with it.
More sleeps and convincing required.
The doctor was very impressed with Holly's progress, her ability to do peek-a-boo, her sensory awareness (turning when she heard a noise, etc.), and general progress.
We discussed the hot topics that Sue and I are thinking about right now - further private intense therapy and the MMR jab debate.
While the NHS won't sanction any more than 6 sessions of additional therapy (£70/hr if your curious), we did discuss that we're prepared to pay for it ourselves after the initial "freebies".
We were told that while intense therapy is good on paper, there's a question about how effective it actually would be. If Holly is going to eventually get to 95% normalcy anyway, the therapy may only serve to get her there quicker and then there's no telling how much quicker. It most likely wouldn't serve to provide any additional help.
Regarding the MMR jab, we were regaled with horror stories of the effects of measles (which just sounded ghastly). While the jab itself may not actually cause autism or other illnesses, it may trigger any dormant neuro problems that are not yet detected and allow them to manifest themselves.
Sue and I are quite confident that Holly is a lot less "Emily-like" (for lack of a better term... "austismy"?) than Emily was at this age. A lot more engaged, verbal and alert.
Again, with the benefit of hindsight, all those people telling us we were lucky having such a lovely placid baby in Emily didn't know how utterly wrong they actually were.
We're still really skittish about the MMR jab as it's still not 100% certain that we wouldn't be signing Holly up to a lifelong disability if we did go through with it.
More sleeps and convincing required.
Monday, 14 January 2013
Holly's movements
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| Random Holly shot. |
We're not sure if this is down to natural forces or a side-effect of her being weaned off her anti-seizure medication topiramate.
She seems to be going through a rough bout of teething again, and these actions could be a result of that, OR they could be some underlying physical issue that was masked by the meds.
She doesn't push back all the time, and it could be an effort to get out of a situation she doesn't want to be in (like sitting up? or having a really sore mouth?). It really is too soon to tell at this point.
We're just trying to collate some further information at this point before raising any alarm bells, but at the end of the day I don't want my one year old child dependent on ANY medication for any longer than is necessary.
We had such high hopes the medication had become redundant (she's due to come off them this week), it would knock the wind out of our sails a bit to discover the opposite is true.
Thursday, 3 January 2013
2012 in Review
It's been quite the 366 days for our family this year. Utterly worthy of noting down for reference in years to come.
Q1 - Jan - March
This was our most tumultuous time. We had brought Holly home from the hospital days before 2012 began, and it was a year sold to us that would be unrivalled - Jubilees, Olympics - Britain would never have it so good.
Come February, we'd received the news we didn't want to receive, but really knew was coming - Emily got her Autism diagnosis. Close went the door with the small chance that it was really a learning difficulty, and we struggled to come to terms with our first born dealing with a life long condition.
March saw Holly have a cardiac arrest and die for around 20 minutes. The vision of a blue, lifeless 10 week old child in my arms sputtering her last breath, mixed with blood is one I will never be able shake - as much as I try.
We spent a month in various hospitals - including a very tense week in ICU at Evelina Children's hospital at St. Thomas', near Westminster.
March also saw Emily turn 4, celebrating near Holly's hospital with all four grandparents in tow. Probably the first and only time this will ever happen. Speaks volumes of the "global community" these days.
Q2 - April - June
Mere days out of the hospital and still on the rocky road to recovery, we all bundled over the sea to Northern Ireland for an Easter holiday - complete with local hospital and doctor details and medication for Holly.
As Holly's condition improved, the weather went in the other direction and we had quite a wet trip of it. A weather phenomenon that we're still experiencing in January 2013.
June found us in sunnier climes as we flew to Spain to celebrate the wedding of our friends Amanda and Dave. Not yet 6 months old and Holly is already a Euro-traveller! Emily was even flower girl for the happy couple.
Q3 - July - September
Sue and I celebrated our 40th birthdays during Q3 of 2012. Momentous occasions for both of us. In August, Sue took both the girls to Australia for three weeks to celebrate PROPERLY. Of course, the trips down and back were not without their peril, but they made it back and Holly added another 10,000 miles to her already impressive first year haul.
September also saw us move into our new house, complete with sizeable girl's bedroom. Holly, for the time being, would reside in Sue and my bedroom - mainly so we can keep an eye on her, but also so she doesn't wake Emily up at 5am.
Mid-September saw Emily start big girl school. We got her into the Rainbows Opportunity Base (that's fancy talk for "Autism special needs school") at Green Wrythe Primary School near St. Helier's Hospital.
Thankfully, as it's quite far away, we also managed to maintain the transport she had for Dragonflies, complete with the same escort - Claire!
Q4 - October - December
Sue's maternity leave ended during this quarter, and she went back to work three days a week. The other two were taken up almost exclusively with medical appointments for one or both of the kids.
Holly and Em had their Canadian grandparents come over and spend Christmas. Their first UK Christmas since 1974. They DID reckon a few things had changed since then - including the abundance of Christmas lights everywhere.
Q1 - Jan - March
This was our most tumultuous time. We had brought Holly home from the hospital days before 2012 began, and it was a year sold to us that would be unrivalled - Jubilees, Olympics - Britain would never have it so good.
Come February, we'd received the news we didn't want to receive, but really knew was coming - Emily got her Autism diagnosis. Close went the door with the small chance that it was really a learning difficulty, and we struggled to come to terms with our first born dealing with a life long condition.
 |
| Our little girl in ICU. |
March saw Holly have a cardiac arrest and die for around 20 minutes. The vision of a blue, lifeless 10 week old child in my arms sputtering her last breath, mixed with blood is one I will never be able shake - as much as I try.
We spent a month in various hospitals - including a very tense week in ICU at Evelina Children's hospital at St. Thomas', near Westminster.
March also saw Emily turn 4, celebrating near Holly's hospital with all four grandparents in tow. Probably the first and only time this will ever happen. Speaks volumes of the "global community" these days.
Q2 - April - June
 |
| Emily as flower girl at Dave and Amanda's wedding |
As Holly's condition improved, the weather went in the other direction and we had quite a wet trip of it. A weather phenomenon that we're still experiencing in January 2013.
June found us in sunnier climes as we flew to Spain to celebrate the wedding of our friends Amanda and Dave. Not yet 6 months old and Holly is already a Euro-traveller! Emily was even flower girl for the happy couple.
Q3 - July - September
Sue and I celebrated our 40th birthdays during Q3 of 2012. Momentous occasions for both of us. In August, Sue took both the girls to Australia for three weeks to celebrate PROPERLY. Of course, the trips down and back were not without their peril, but they made it back and Holly added another 10,000 miles to her already impressive first year haul.
 |
| Emily in her new school outfit. |
Mid-September saw Emily start big girl school. We got her into the Rainbows Opportunity Base (that's fancy talk for "Autism special needs school") at Green Wrythe Primary School near St. Helier's Hospital.
Thankfully, as it's quite far away, we also managed to maintain the transport she had for Dragonflies, complete with the same escort - Claire!
Q4 - October - December
Sue's maternity leave ended during this quarter, and she went back to work three days a week. The other two were taken up almost exclusively with medical appointments for one or both of the kids.
Holly and Em had their Canadian grandparents come over and spend Christmas. Their first UK Christmas since 1974. They DID reckon a few things had changed since then - including the abundance of Christmas lights everywhere.
Tuesday, 11 December 2012
Dinner with Dads
Had a nice Christmas dinner tonight with dads of autistic children.
I was told years ago that you make your second set of friends via or through your kids. I think back to my childhood and some of my parents' good friendships stemmed from the parents of kids of my or my sisters' age.
Of course, I never thought in a million years, it would be friendships based on the common thread of disability.
We had a lovely curry as we got to know each other and our children a little better. It was an even peppered with poppadoms and tales of sleep issues, food issues, benefits we could get and where to spend our respite allowance.
It was a nice evening and even though our children were tucked up in bed, they were in our thoughts and conversation the entire evening.
Oh, and the curry was very VERY nice.
I was told years ago that you make your second set of friends via or through your kids. I think back to my childhood and some of my parents' good friendships stemmed from the parents of kids of my or my sisters' age.
Of course, I never thought in a million years, it would be friendships based on the common thread of disability.
We had a lovely curry as we got to know each other and our children a little better. It was an even peppered with poppadoms and tales of sleep issues, food issues, benefits we could get and where to spend our respite allowance.
It was a nice evening and even though our children were tucked up in bed, they were in our thoughts and conversation the entire evening.
Oh, and the curry was very VERY nice.
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