Sue went to see Holly's paediatrician earlier this month, and we received the notes from that meeting in the post today. It still floors me that the letter was sent out to 11 different people/departments - all for one little girl!
As Holly is progressing and showing noticeable signs of improvement, we still think she's doing well. Reading through the notes, I realise that I may be deluding myself. There's a lot of development delay which isn't all that apparent to me, because the only yardstick I have to compare to is Autism. Also, seeing the phrase "Diagnosis: Cerebral Palsy" really makes it a lot more real.
Apparently various things that Holly is doing are at 15 month levels or 18 month levels. She's behind, but only by a few months (as she's only 22 months old tomorrow). This is really why this early intervention is key. I can only imagine how far she'd be behind if we DIDN'T have 11 departments/people working on our team.
The notes did point out that she's a happy little girl, which is very true (apart from when she's tired cranky or teething) and that good progress is being made.
Regardless of where she is on the months development scale, I'm still proud of my little girl and happy to have her here at all.
As I type this, she's happily sitting next to me playing peekaboo by herself and saying "oh dear" while I make dinner. I guess it's time I sign off and ask (to noone in particular) "Where's Holly?"
Until next time.
Friday, 25 October 2013
VB with ABA for Emily!
I'm off to an all day workshop tomorrow to find out more about VB (Verbal Behaviour) and ABA (Applied Behavioural Analysis). It's theories for therapy to aid with Autism run by ABA Tutor Finder.
There's three workshops and the first one is tomorrow from 10-4.30 in Holborn. I can imagine it's going to be pretty full on, but I hope I can get some practical takeaways to apply to Emily.
According to the website, "The course is suitable for both families and therapists wishing to further their understanding of ABA as an intervention for children on the autism spectrum and is an excellent opportunity to meet and network with fellow families and/or therapists."
Sue and I are both wracked with guilt that while Holly is the more pressing need ("the first two years are the more important") we're doing things for her at the expense of Emily. This is part of our effort to balance those scales.
Fingers crossed.
There's three workshops and the first one is tomorrow from 10-4.30 in Holborn. I can imagine it's going to be pretty full on, but I hope I can get some practical takeaways to apply to Emily.
According to the website, "The course is suitable for both families and therapists wishing to further their understanding of ABA as an intervention for children on the autism spectrum and is an excellent opportunity to meet and network with fellow families and/or therapists."
Sue and I are both wracked with guilt that while Holly is the more pressing need ("the first two years are the more important") we're doing things for her at the expense of Emily. This is part of our effort to balance those scales.
Fingers crossed.
Charity for Holly
Sue brought Holly home from Busy Bees on Wednesday and let me know that they've nominated Holly as the recipient for their autumn fate fund raising event at the end of November.
I'm quite chuffed and also slightly embarrassed at having Holly singled out like this, but at the end of the day if the money raised can help her even a little, it's something I can get over.
The next step, from what Sue told me, is we need to piggyback on a proper charity who will receive the money and then allocate it in some way to Holly - either for hardware for her or further 1on1 support or even to pay some of the way for us to go to the Bobarth Centre in North London.
Really nice gesture at the end of the day.
I'm quite chuffed and also slightly embarrassed at having Holly singled out like this, but at the end of the day if the money raised can help her even a little, it's something I can get over.
The next step, from what Sue told me, is we need to piggyback on a proper charity who will receive the money and then allocate it in some way to Holly - either for hardware for her or further 1on1 support or even to pay some of the way for us to go to the Bobarth Centre in North London.
Really nice gesture at the end of the day.
Sunday, 20 October 2013
Emily continues to prove me wrong
A few weeks back, Sue was adamant we get a trail gator contraption, to hook her bike up to Emily's. While I was hopeful this wouldn't end on the scrapheap of aids for Emily like so much other good intentioned purchases did, I wasn't so sure.
Emily had shown no interest in her bike (as it's not a book) and the few times we had her on it were short lived to say the least. The outcome, as I could tell would be one of three scenarios - she'd stay on her bike and love it; she'd get bored and try to get off and end up grazing/bruising/hurting herself; she'd end up not enjoying it and let everybody know. I, personally, was expecting the second result as she's quite akin to leaving tasks she bores of without much thought for anything - let alone her well being.
Well, I'm glad to say she's proved me wrong. She stayed attached to Sue for the entire duration of our ride to the nearby park and back. She was happy to hop on the bike and be pulled around. I think most of the time was spent in her little world taking everything in, apart from the actual ride, but this is a really great stepping stone to doing more rides and getting her more accepting of it.
Emily had shown no interest in her bike (as it's not a book) and the few times we had her on it were short lived to say the least. The outcome, as I could tell would be one of three scenarios - she'd stay on her bike and love it; she'd get bored and try to get off and end up grazing/bruising/hurting herself; she'd end up not enjoying it and let everybody know. I, personally, was expecting the second result as she's quite akin to leaving tasks she bores of without much thought for anything - let alone her well being.
Saturday, 28 September 2013
Music Therapy for Em
We took Emily to music therapy today at Nordoff Robbins. The venue is a building next to the BRIT school in Croydon, which is kinda cool.
It was a half hour session with an Irish guy called Jimmy and he said afterwards that he could tell she was quite musical (nursery rhymes aside). When he changed key, she changed with him for instance. Apparently she also plinked away on the piano a little as well.
Afterwards, we were in Toys R Us and I felt like putting this to the test. I went over to the keyboards with Em and turned one on, playing a few notes. Em managed to plunk out a random tune as well. Not the Mozart I was hoping for, but she didn't shy away like she does when I approach her with my guitar in hand.
All in all, it seemed like a very positive experience and I'm looking forward to Em exploring music more and more over the coming sessions.
It was a half hour session with an Irish guy called Jimmy and he said afterwards that he could tell she was quite musical (nursery rhymes aside). When he changed key, she changed with him for instance. Apparently she also plinked away on the piano a little as well.
Afterwards, we were in Toys R Us and I felt like putting this to the test. I went over to the keyboards with Em and turned one on, playing a few notes. Em managed to plunk out a random tune as well. Not the Mozart I was hoping for, but she didn't shy away like she does when I approach her with my guitar in hand.
All in all, it seemed like a very positive experience and I'm looking forward to Em exploring music more and more over the coming sessions.
Monday, 9 September 2013
Weekend with Emily (and attempts at dressing)
A slight snafu with a passport meant that Sue and Holly headed off on holiday to the Netherlands without Emily and I on Friday.
This actually worked out quite well, as I think Emily was feeling a little neglected and in Holly's shadow. Being away from her might be good (even if only for a few days) as she would have my attention 100%.
I've not been so hugged or interacted with by her in such a long time. We did a few errands together over the weekend, went to a couple of parks and even had Sunday morning "coffee" together at Costa.
One thing I'd been trying to get Emily to do over the weekend was to put her own nappy and trousers on. She can do shoes and (to some extent) tops over the head. She managed her trousers by herself on a couple of occasions. These successes were met with smiles, thumbs up and high fives. On at least one successful attempt, I actually got a smile and eye contact from an elated Emily.
It wasn't all fun though. There were a number of attempts where she started but go distracted by ... anything. If it wasn't so tragic, it would be comic watching someone try to clothe themselves with absolutely no interest in it, to the point of staring aimlessly out the window.
Not only do I have to pick my battles, I have to pick where I play them out.
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| Emily enjoying a babyccino at Costa. |
This actually worked out quite well, as I think Emily was feeling a little neglected and in Holly's shadow. Being away from her might be good (even if only for a few days) as she would have my attention 100%.
I've not been so hugged or interacted with by her in such a long time. We did a few errands together over the weekend, went to a couple of parks and even had Sunday morning "coffee" together at Costa.
One thing I'd been trying to get Emily to do over the weekend was to put her own nappy and trousers on. She can do shoes and (to some extent) tops over the head. She managed her trousers by herself on a couple of occasions. These successes were met with smiles, thumbs up and high fives. On at least one successful attempt, I actually got a smile and eye contact from an elated Emily.
It wasn't all fun though. There were a number of attempts where she started but go distracted by ... anything. If it wasn't so tragic, it would be comic watching someone try to clothe themselves with absolutely no interest in it, to the point of staring aimlessly out the window.
Not only do I have to pick my battles, I have to pick where I play them out.
Tuesday, 3 September 2013
New School Year!
It's hard to believe that Emily is entering her third year of structured school activity.
She was in Dragonflies from 2011-2012, Red Squirrels at Rainbows from 2012-2013 and now she's an Orange Tiger at Rainbows for the 2013-2014 school year.
She arrived home today and gave me a massive hug and cuddle, before running off to her trampoline.
Not really sure what this year will have in store for her, or what advances / breakthroughs there will be (if any).
Her class has the addition of another girl (of the three girls in the school, two are Orange Tigers) so it will be interesting to see if there's any female bonding at all.
Watch this space.
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| Emily on day one of school. |
She was in Dragonflies from 2011-2012, Red Squirrels at Rainbows from 2012-2013 and now she's an Orange Tiger at Rainbows for the 2013-2014 school year.
She arrived home today and gave me a massive hug and cuddle, before running off to her trampoline.
Not really sure what this year will have in store for her, or what advances / breakthroughs there will be (if any).
Her class has the addition of another girl (of the three girls in the school, two are Orange Tigers) so it will be interesting to see if there's any female bonding at all.
Watch this space.
Friday, 30 August 2013
Camping in Dorset
We got back today from camping in Dorset with two other families.
I really had no qualms about taking Emily as she's always going on about "tent" and wanting us to cover her with an afghan, duvet, etc. and Holly is at that easy going age where she's not all that arsed where she goes as long as there's food and a clean nappy.
Sue managed to cram everything we needed to into the car - including tent, sleeping bags, clothing, pushchair AND Holly's monstrous walker. We managed to push her around the campsite a few times, much to her (short lived) delight.
The biggest pain was Emily unfortunately. While she was happy to dance around and explore, she really had no about dancing and exploring in the middle of the road, or running off to another part of the camp ground and doing her thing there. While she was awake, Sue and I had to keep one eye on her and one eye on what we were doing - which never really resulting in us relaxing, until after she was asleep.
Holly was the star of the show with her vast appetite. No one could believe that a child that size could eat FOUR breakfasts (banana, cereal, toast, custard/yoghurt) and still be up for whatever ANYONE else was eating. I'm thinking/hoping she's just going through a growth spurt and that we're not going to have a Clifford the Big Red Dog on our hands ("he eats and drinks A LOT").
We capped the holiday off by spending the day on the beach near Sandbanks (near Poole). Apart from getting sand EVERYWHERE, it was a nice relaxing way to spend the day. Emily decided that the feel of the sand was really nice and proceeded to bury her face in it, as well as run her feet and arms in it. The shower that evening was FILLED with sand.
We also got her to eventually accept the water and have a bit of a dip. Small steps, even though she likes swimming (in a pool).
Glad we could get away and it was a good relaxing time (apart from chasing Emily) for everyone involved.
I really had no qualms about taking Emily as she's always going on about "tent" and wanting us to cover her with an afghan, duvet, etc. and Holly is at that easy going age where she's not all that arsed where she goes as long as there's food and a clean nappy.
Sue managed to cram everything we needed to into the car - including tent, sleeping bags, clothing, pushchair AND Holly's monstrous walker. We managed to push her around the campsite a few times, much to her (short lived) delight.
The biggest pain was Emily unfortunately. While she was happy to dance around and explore, she really had no about dancing and exploring in the middle of the road, or running off to another part of the camp ground and doing her thing there. While she was awake, Sue and I had to keep one eye on her and one eye on what we were doing - which never really resulting in us relaxing, until after she was asleep.
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| Emily having a sensory time on the beach. |
We capped the holiday off by spending the day on the beach near Sandbanks (near Poole). Apart from getting sand EVERYWHERE, it was a nice relaxing way to spend the day. Emily decided that the feel of the sand was really nice and proceeded to bury her face in it, as well as run her feet and arms in it. The shower that evening was FILLED with sand.
We also got her to eventually accept the water and have a bit of a dip. Small steps, even though she likes swimming (in a pool).
Glad we could get away and it was a good relaxing time (apart from chasing Emily) for everyone involved.
Saturday, 3 August 2013
NAS campaign
I've just signed an NAS campaign, and so should you.
If you go over to Put autism on the NHS agenda you can fill in a campaign aimed at the NHS. As the campaign page states:
"A brand new health body called a Health and Wellbeing board is being set up in your area. It will have a crucial role in deciding what areas of health and social care should be prioritised, and checking if your council and the NHS are being transparent about the support they’re providing adults with autism.
To effectively do their job, they need to understand autism and the current challenges in your area. Otherwise, their role in helping adults with autism will be wasted.
You can help by sending them our message using this online form. That way we can put autism at the top of their agenda from the start."
It does worry me about how Emily will be treated, live, etc. as she enters older stages of her life. Hopefully getting the NHS to think about it and sort things out now will make sure she's well cared for in 10, 15, 20 years' time.
Intense therapy for Holly
At this week's physio session for Sue, it was decided that due to Holly's progress no further intense sessions were required.
This was wonderful news, as not only does it mean Holly's progress is going well, we also get to reclaim some holiday time and have a break together! Whether this means we try and steal some of the fading embers of the summer and go away or book a couple of weeks at Christmas, we've now been given a get out of jail free card.
The only caveat we were given was to take Holly's walker contraption wherever we go, so we can keep up with her walking therapy. This thing is a massive thing and could potentially limit any holidays to staycations, but that's not really a problem.
This also means we don't have to wait and see about the Bobarth Centre therapy sessions in North London.
In case you were wondering, Holly IS making wonderful progress. She hates lying down and if you pick her up to sit up, she will throw a strop if you don't pick her up to let her walk around. She's still really weak in her trunk but the dedication and strong-mindedness is there to want to do it. More home therapy around trunk strengthening is really needed and hopefully she will eventually walk unaided.
We've been told she may never be able to do a trek, but instead may either need a cane or walking stick or only be able to walk small distances before needing to sit down again. I'm hoping small distances equates to around 4-5 miles, because I'm there with her on that. Somehow, I assume it's much shorter than that.
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| Holly in her special high chair. |
This was wonderful news, as not only does it mean Holly's progress is going well, we also get to reclaim some holiday time and have a break together! Whether this means we try and steal some of the fading embers of the summer and go away or book a couple of weeks at Christmas, we've now been given a get out of jail free card.
The only caveat we were given was to take Holly's walker contraption wherever we go, so we can keep up with her walking therapy. This thing is a massive thing and could potentially limit any holidays to staycations, but that's not really a problem.
This also means we don't have to wait and see about the Bobarth Centre therapy sessions in North London.
In case you were wondering, Holly IS making wonderful progress. She hates lying down and if you pick her up to sit up, she will throw a strop if you don't pick her up to let her walk around. She's still really weak in her trunk but the dedication and strong-mindedness is there to want to do it. More home therapy around trunk strengthening is really needed and hopefully she will eventually walk unaided.
We've been told she may never be able to do a trek, but instead may either need a cane or walking stick or only be able to walk small distances before needing to sit down again. I'm hoping small distances equates to around 4-5 miles, because I'm there with her on that. Somehow, I assume it's much shorter than that.
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