Saturday, October 22, 2011

Almost a year...

I have neglected Isla's blog for so long.

My sweet little princess is almost 7. She's now lost 5 teeth, and looks completely grown up. This photo was taken yesterday afternoon.

Isla's been doing so well at school. At the end of last term, she won the PBIS Award for her class, which she is super proud of. Last week she had to give a 2 minute speech on kangaroos and their environment and received another award for her public speaking. She was picked to give her speech in front of the school at assembly, and she could barely contain her excitement.

Isla's had 2 lots of Botox since I last updated, and will be having another round in December. Her left leg has responded brilliantly to the botox and casting regiment that her physio has her doing, but her right leg has really tightened up, to the point that we're now worrying about contractures, as she can't seem to get her foot to 0 degrees.

We have a review with the Botox Doctor on the 4th to see what's going on with it all. At the moment, Isla is wearing AFO's all day every day and padded AFO's during the night. She still has canvas wrap-arounds that she is also meant to wear of a night time, but I'm finding this really tough to enforce, given she needs to have some comfort when she's sleeping (already being in AFO's and all) but we're getting to the stage of needing to straighten her legs out to prevent hip injuries.

Isla's right leg is turning in at such an angle that her foot is almost completely sideways when she walks, hence the worry about hip injuries, but surprisingly, her 6 monthly hip xrays show amazingly good range considering her CP. So that's good news.

Tuesday will be a very exciting day in this house, because Isla will finally get her wheelchair! She is beyond excited about it. I've promised her a trip to the zoo asap because it's always been too far for her to walk in the past, so she's really looking forward to it, as we all are, it'll be great to be able to get out and do different things now that distance wont be an issue.

My sweet girl is obsessed with reading, singing and all things Littlest Pet Shop. It feels like only a few months ago she was sitting in her bumbo bouncing to the sounds of Hi 5, now she's a school girl with grown up teeth, reading books and using the computer properly. In fact, she now asks me questions, and if I don't know the answer she says, "don't worry Mum, I'll google it". Far out.

Wednesday, November 3, 2010


Was it really July when I last posted on here?

Poor Isla.

I had an appointment a few weeks back with Isla's school regarding funding for aide hours next year. Good news is, she's guaranteed hours until 2013 when she'll be reviewed again and because of her age will more than likely get more hours. Bad news is, still at 3 hours per week, but it's better than nothing, and with only a few weeks of school left, 3 hours has done her quite well {but of course, like most things, it could be better}.

Isla's tone is starting to increase now, it's been 5 months since Botox, but her measurements remain quite good. It's hard to see her walking up on her toes again though, it's quite noticeable at the moment.

Isla took part in a muscle stimulation trial/study a few months back where we used a mini tens machine on her right calf muscle for 30 minutes per day for a week. Isla tolerated it really well and we look forward to hopefully being included in the group when it's up and running.

Last week Isla had her first {and hopefully last} ambulance trip. I picked her up from school and she was fine. We went to get her an icy pole from the shop and on the way she was talking about a spider being on her at school. Once we got to the shop she was boiling hot to touch and covered in goosebumps. When we got home the vomiting began and her torso was covered in a red blotchy rash. I freaked out and called 000, but by the time they arrived her temp had started going down, but was still so high at 39.1 so off she went to emergency for a while.

Turned out to be nothing to do with a spider, but an infected throat. Little poppet is aok now.

A few weeks back, I bought Isla her proper 'big girl' bed, upgrading from her toddler bed. We picked an awesome set of bunks with desks built in. So far just Isla is in there, I'm not ready to introduce Harper into the mix just yet!

At the end of September Isla lost her first tooth, and now has another wiggly one! So exciting! I thought she'd freak out by it, but she was so excited, she actually yanked it out!

I think that's everything I've neglected to update the blog-world with...

The above photo is from Isla's school's Halloween Disco last week. She had such a great time and loved dressing up so much!

Monday, July 19, 2010

It's been forever since I posted.

Isla had botox on the 7th of June and was so so brave. The anaesthetist was running late and Isla was the 5th kid on the list so didn't go under until 1pm, she was SO hungry, poor little mite. Hamstrings and calves injected {one day I'll actually learn the proper names of the muscles}. She was pretty nauseas when she woke up so had something put in the cannula to make her feel better, then proceeded to down a cup of hot chips in no time at all.

Isla continues to amaze me whenever she has to go to an appointment like this. She never complains, in fact she was actually excited to go and kept talking about her sleeping mask. I think that if she were to know what actually went on with the injections etc once she was asleep it might be a different story.

We were meant to go to Dr L for a post-botox review on the 6th of July, but Ian's Mother passed away suddenly that morning, so I haven't been able to organise another appointment for her as yet.

She had her serial casting on the 9th and had her measurements taken by her physio, Michael at the hospital - we've finally managed to get into the hospital for physio & OT which will save me almost $5,000 a year. Michael said her response to the botox was "really good" and that she'd only need 1-2 weeks of plasters, not the 3-4 we initially anticipated due to her high tone. So, after one week we went back and had them removed {she chose purple this time} and Michael was so thrilled with her response that she didn't need any more plasters!!!

The most exciting part of this is that Isla doesn't need to be in plasters when she goes back to school tomorrow. Awesome.

We have a long term wheelchair trial at the hospital on the 26th, which I am pretty apprehensive about. I have no idea how it all works, and the idea of her being in a wheelchair frightens me, but she's excited about it. The wheelchair rep is coming out to meet us at the hospital...I think...

What else?

Isla's school report came the last week of school and I am so proud of her. She was above average in everything ♥ She loves school so much, has made so many friends, I am so so proud of her. I sent the book "Nicholas Nigel Norris" to school with her when she went into her Orthotics, and the teachers have sent it all around the school, which has been really positive. Actually, it's still there, I'll have to chase it up!

Isla's still scared to be at school in the playground. There are almost 500 kids in such a small {concrete} area, she's terrified of being knocked over. Ian and I plan on speaking to the Principal about this asap. Poor little mite.

Dr L wrote a long letter for Isla in the hopes that she'll qualify for more aide funding at school. At the moment she's only receiving 3 hrs per week, but most of that goes to sport {!!} I'd rather her have standby support at recess and lunchtime. We'll see what happens there.

Tuesday, May 25, 2010

Isla had an appointment with Dr L today to review her kidney ultrasound and abdo xrays from 2 weeks ago. Background to these tests, Isla had incontinence following Botox last November - cause unknown, but suspected Botox spreading from injection site. Dr L hadn't had any reported cases of this and was quite perplexed and concerned, hence the tests.

So, we're about to head out the door when the phone rings. It's a lady from the Dept of ACDH. Sh was lovely, but did mention that Isla doesn't qualify for anything from them because she doesn't have an intellectual impairment....but hang on, what about her physical one?

Her advice? Try MDS {our local disability service providers}. I'm sure they'll be of great help {note sarcasm here}. I have emailed them, I can't wait to hear them say she's not eligible.

Why is this so difficult? Why aren't physical disabilities being taken into account for these types of Departments? Why are these kids {and adults for that matter} forgotten? Where's the equality?

We head off to see Dr L. His other appointments are running late so it's a perfect opportunity to discuss things with him. First and foremost, he goes over Isla's xray and ultrasounds. No problem with her kidneys and the way they drain {phew!} she does, though, have a compacted bowel which he believes is putting pressure on her bladder and causing the incontinence. Can see a tiny smile of relief on Dr L's face at this news! We need to see or Paed, Dr F for treatment.

Dr L mentions he's "heard through the grapevine" that Isla doesn't have access to any services. I have a total panic thinking he's been reading my blog, {I am going back in my mind thinking, hoping I have ben nice!} and he says that the wonderful Orthotist, Felicity, that made Isla's new "helpers" had spoken to him about it. Bless her {did I mention she has new helpers? They're "rainbow" and she loves them}.

Felicity is wonderful, really wonderful. She asked all the questions I'd wanted someone to ask me, she listened, and she acted on it. This never happens! She's amazing. I can't wait to see her in 2 weeks at Botox and thank her.

I digress.

Dr L asks about how she gets around school. I say fine I guess, I haven't been told otherwise, she generally has an aide with her when she's navigating the playground, but misses out on some of the sport/exercise etc. He asks how she goes on excursions - they haven't had any yet. He suggests the school provide her with a wheelchair. He then says I should look at getting one for her too for longer walking trips {longer than 500ish metres}.

I gasp.

I wasn't ready for it.

I suggest perhaps an "old lady walking frame", he nods. I suggest elbow crutches, he nods.

It hit me like a tonne of bricks. I knew it would happen at some point but I didn't think it'd be now.

We go on to talk about the Medicare safety net, and how I need to register for it, and should be able to claim Isla's physio expenses. He agrees with me about the crappy way TSC is set out. AND it turns out that while we lived with Dad we could have and should have been accessing TSC campus about 15 minutes from home, not the place about 45 minutes away, but that's a whole other rant in itself. He agrees that it'll be hard to qualify for anything given Isla has no Intellectual Impairment.

What to do now?????

Two weeks til Botox. Wish us luck.

PS Here's Isla in her new 'Helpers' ready for school - complete with flashing shoes to help her get that all important heel-strike ;)

Thursday, April 29, 2010

...why Isla has wobbly legs".

This is how my walk to school went this morning.

I think it's the first time that someone has ever asked me that question. Most of the time I think people wait for me to offer up an explanation.

"She has Cerebral Palsy" I replied.

The mother who asked is Isla's best school-friend's mother, and she is so lovely. I think she was worried about asking me, because she said, "I'm sorry, I mean if it's okay for me to ask?".

I don't know how much information to give. Do I leave it at CP or do I go on about how she got it, where she's affected, what the future holds for her? How much information do people actually want?

I was lucky in that she asked more questions like, "Was she born with it?" and "Do you know why?". All questions I could answer.

I offered up some info on her Orthotics {which we pick up in 2 weeks, yay!} so that they know what they are when Isla starts wearing them again.

I could feel my voice going funny when I was talking about it, you know that wavering feeling just before you burst into tears? But the thing is, I wasn't sad, I was happy. Really happy that she asked me, that she didn't just fob off the kids questions and actually asked and was interested in Isla and her CP.

Isla has started going to Before + After School Care on Fridays while I'm at TAFE, and her little friend goes with her. The mother said she loves Isla so much and always hears about her from her daughter. She said that when she picked her daughter up from ASC she asked the teachers how Isla settled in on her first day there ♥ only to be told that the children there were all falling over each other to be the person to help Isla out ♥

This has been the best thing about starting school for Isla, the way that the other kids want to help her and don't want her to miss out on doing anything. At school, her teacher said the kids race each other to get to Isla's bag to help get her fruit out for munch 'n' sip. They all want to take a turn at sitting on the cushions with her. Kids can be awesome ♥

Monday, April 26, 2010

Back in December 2009 I got fed up with the lack of services etc available to Isla.

I think it would have been around the time I was trying to sort out an aide for her schooling, and trying to be able to pay for the bulk of it myself.

I sent an email to Nicola Roxon, Minister for Health. It's down below if you want to read it {it's the same babble that I've been going on with here though}.

I mention that we can't access DADHC because we have to go through TSC who give us nothing. They've {Dept of Ageing, Disability and Home Care} told me repeatedly that they cannot help us.

So imagine my surprise when I receive an email from a DADHC Intake Officer who says she's been trying to contact me. Yes, an INTAKE officer.

The email I sent to Ms Roxon was forwarded to Jenny Macklin, who I didn't hear from until a week or two ago, and typically, I can't find the letter now *roll eyes*.

It came with a heap of Govt crap, like we're investing $$$ into blah blah blah, which is great, but I don't care. They gave me numbers for free Govt Carers Counselling {which I'm happy to pass on if any others out there want it} a service I never knew existed. They gave me contact details for Respite.

She {or her representative writing to me} forwarded my email and their response to another Minister who this "issue" falls under his portfolio for his "direct consideration and response". They told me to reapply for the Carer's Payment because the criteria have changed since July 2009.

I did initially wonder whether the reply was in response to the National Disability Insurance Scheme that they're working on, or maybe the Aust Govt's Productivity Commission 's inquiry into Disability Care and Support.

Who knows?

Either way, it'll be interesting to see what happens from here.
Dear Ms Roxon,

My name is Allison Farr, and I am the mother of Isla, who is 5 and has Cerebral Palsy. I am writing to your office for your help, in finding the answers to my questions which no one else seems to be able to provide. I am a single mother and a full time student. I have a one year old child as well as Isla.

I applied for funding for Isla from the Dept of Health and Ageing, who denied her, saying that we had to access The Spastic Centre, who would help us out.

The Spastic Centre classify Isla as mild (in comparison to the severe cases they deal with) therefore we don't qualify for their services, except for group therapy, which is of little help to Isla as she is more "advanced" than the others in her group and is often left out of the activities. It is not therapy as such, more like playgroup/social interaction.

We cannot access the local Paediatric Allied Health Unit of our local hospital for Physiotherapy and Occupational Therapy for Isla because we're involved with The Spastic Centre (and we're on waiting lists, we're not actually accessing ANY services from them whatsoever). We're not involved with any form of Early Intervention. I wanted to apply for the DADHC Family Assistance Fund, to pay for Isla to do Riding for the Disabled, but again we don't qualify for it because we're not involved with Early Intervention. We were able to access the PAHU of our local hospital before we moved into a different region, but no one organised our files to be transferred to the new area, no one gave us names of who to see, where to go. Now we've moved back to our old area and are on the wait list to get back in to these services.

We have to pay to see a private physiotherapist, a private orthotist, private specialists (including rehabilitation specialists, neurologists, opthamologists, paediatricians). In addition to these people we see, Isla also has Botox Injections into her legs to help her walk, which is followed by weeks of serial casting, at $250 per week, and Ankle-Foot Orthotics which cost $1400 per year. It costs me $5000 in therapies etc per year. We don't have access to aides for her for things like toileting because her Occupational Therapist said the wait list is too long, and only the more severe cases get approved.

We don't qualify for the Carer's Payment, because Isla is not severe enough, yet she cannot walk further than 50 metres without falling over and being unable to walk further, also when she falls she's unable to help herself back up. Isla is unable to take herself to the toilet. She is unable to dress or undress herself. She has great difficulty brushing her hair and teeth. She is unable to sit on the carpet cross-legged. She is unable to walk in large groups of people as she has very little balance. She has difficulty climbing into her low toddler bed. She cannot cover herself over with a blanket. She cannot climb into the car. She struggles going up a single stair. She cannot stand in the shower, and cannot get herself into the bath. She has difficulty climbing onto our dining chairs to sit with us for dinner. She has toileting accidents almost daily when she has the Botox treatments. She is five years old.

All these things and we're told she's not disabled enough.

She tests well in cognitive skills, which is where we start to have problems - in that, she's not mentally disabled so we have all our attempts at funding denied. I have to lift her for all the above mentioned activities. I cannot take the children shopping, because Isla can't walk far enough, and is too big for a pram, and too big for a trolley. I haven't been offered any form of respite. No form of counselling. Isla's disability is impacting on almost every part of my life, not just hers.

I have to pay for all her therapies and treatments out of my own pocket. My (now separated) husband and I had to hold a private fundraiser to be even able to afford Isla's therapies. I contacted Centrelink about their Carer Adjustment Payment but was told we didn't qualify. We live in a rental property and cannot make adjustments to the house to accommodate Isla, such things as doors on the bath-tub, hand rails in the toilet, shower and to the front door. We cannot put in a ramp to the front door to help Isla get inside.

She will need an Aide at Primary School in 2010 but they aren't sure whether they'll be able to get enough funding for one, so it may well cost me to send her to the local public school by paying privately for an aide.

We're stuck. No one seems to want to help us. We've slipped through the cracks and no one seems to care.

Please help. Please point me in the direction of SOMEONE that can help me.

Allison Farr

Wednesday, April 21, 2010


So, the Spastic Centre called me today, and asked me if Isla was going to go to the Gym group.

Last year we had an "assessment" with TSC who thought Isla would like their group - which consisted of similarly able children who get together of an afternoon at 3.45pm and do dancing, stretching, games etc.

Sounds great, except that this group is about a 50 minute drive from here, and Isla doesn't finish school until 3pm. I can't imagine how long it would take to get home in peak hour...and I have TAFE too.

I tell them it's not practical for us to get there and we can't make it in time, and I have schooling commitments. She said, "Okay, well if you decide you want to access our service again, you'll need to contact Pathways and wait for the intake".


This is what really shits me about TSC. We're not a priority for them, and I get it, I understand, Isla is mild by their classifications. She is certainly more able than the majority of their patients, but she still has needs...more needs than just a play group.

We're not offered OT or Physio through them. We were offered a speech assessment which Isla "passed" with flying colours. She's never had speech issues {apart from a stuttering problem which went away on it's own accord}. What she needs is Physio and OT, but I can't see a private physio and access TSC. So what choice do I have? Sit around and wait for months for Isla to come up on their lists for review and assessment and not have her seen in the meantime?

I know their resources are stretched. I know they prioritise their services for those who need them most, but we've been dealing with them, and I use the term loosely, since Isla was one. And in that time she's had playgroup a handful of times, where she was either ignored or used as a model, "come on Bob, look at how Isla's knee walking, you do it too!". The therapists didn't spend any time with her...


And I feel guilty for being annoyed with them. I guess they're doing the best they can, but I hate this feeling that my little girl is falling through the cracks in the system, because by their classifications she's mild, yet compared to a "normal" child, she has increased needs. What am I meant to do?

I have a 5 year old, who can't get in or out of a car on her own. Who can't get herself into a bath. Can't stand up in a shower, can't dress herself. Cant brush her hair. Struggles to brush her teeth. Can't cover herself with a blanket. Struggles to walk up the small step into our house. Can't sit with her legs crossed. Can't get up on to a dining chair. Can't walk more than 100ish metres without falling over. Can't stand still without losing balance and falling over. Who can't control her bladder and bowel {still not sure if this is botox or what's going on}. Who still has problems with dribble because she's tightening up around the jaw....Her last assessment showed her gross motor skills to be under a 2 year old level...

I just wish that she was a priority.