Send Chloe to the NAPA centre
People with dyspraxia need to repeat things hundreds, if not thousands of times to be able to achieve what they're trying to do with relative ease. For Chloe what we've found is doing very intensive therapy helps her overcome this. For example, she has achieved walking in the past six months due to intensive, treadmil type training......she was able to practice stepping thousands and thousands of times before she was able to take her first steps 'for real' in every day life. The NAPA centre in Sydney (originally in Los Angeles) specialise in this type of therapy, and we'd love to be able to take her there.
We are hoping to prepare a program for Chloe to spend 4 hours a day with therapists with the goals of: walking independently in unfamiliar environments, limiting her falls, being able to use her hands appropriately for play, eating independently (she would dearly love to feed herself), eating a wider variety of textures, and most of all this would all help her engage and play with children of a similar age: something she's desperate to do. Most children that attend the NAPA centre achieve 6-12 months of development per intensive 'session'.
Unfortunately these programs are really expensive. We are hoping to raise $15 000 to send us to Sydney for a three week intensive program sometime this year. We would be so very thankful for your support to help us help Chloe, and get her walking steadily and hopefully be able to communicate with us. I honestly believe her life will be set on a different path if we can help her achieve those goals.
**update: we are so very grateful to have reached our initial goal, and through further various fundraising opportunities we have now changed the goal with the hope of raising enough money for therapy for Chloe for a year at the NAPA centre. Thank you for your support, liking and sharing our page. M
Madeleine & Ryan
P.S. If you haven't found us on Facebook you're more than welcome to follow 'Chloe's next step' and we will also keep you updated there. x
At the beginning of the year Chloe was falling over so much we were attending Emergency Departments every month for sutures or glue for wounds in her head. With a newborn and also 2 year old Kieren to take care of it was extremely difficult to keep Chloe safe and so very stressful. A definite low was sitting down to feed Amelia at PMH only to have Chloe fall and fracture her front tooth while waiting for an appointment. For Chloe this meant surgery to remove the remainder of the tooth. Unfortunately she had to wait 5 days with an exposed nerve before it was removed – she wouldn’t eat, and was barely maintaining her fluids. A massive positive is that we haven’t been to an ED for Chloe since we went to Sydney for NAPA in June! She got so much out of going and we can’t wait to see what she gets out of the next visit!
The last NAPA intensive really showed us that intensive therapy with specialist therapists is definitely the way to go for Chloe. At the moment she is walking around the house confidently. As she has low vision it’s hard for her if something is left on the floor. Outside she is not so confident and frequently falls over threshold steps, falls where surfaces change and just drops to the ground to avoid falling when she feels unsafe or not sure where she is. This is an excellent strategy……unless you’re trying to get Chloe to walk somewhere while wearing a one year old and also wrangling a three year old! This is one of our major goals for the first half of the year as it will free us up to go places without the need of someone else. You know how sometimes kids just need their Mum and a park? I’m looking forward to our first picnic with just the four of us, no wheelchair, no aids, no stress. No worrying about the surfaces and trying to remember every little step in the park and pre-empt what she’s going to have trouble with. This would also mean we could visit people a little more frequently than we do now! It’s hard when you’re invited somewhere and need to wait until you’re both free to be able to wrangle everyone safely and hopefully not break the place you’re visiting or Chloe!
Having said all of that, Chloe will be changing schools next year. There is a lovely school near us that appears to be purpose built for a child with a vision impairment. There are no threshold steps anywhere – even in the playground! For Chloe this means being independent without the need for someone to be a ‘catcher’. The current school has uneven gutters and cement work throughout it. The new school also has rounded tables in their classrooms. Chloe’s gained two scars on her cheek this year from falling into furniture with sharp edges. What really sold Chloe though was their hydrotherapy pool. She loves to swim! It was so nice to see her get around her new school with so much ease, and not need so much physical support to avoid hazards and obstacles. We think it has to be good for Chloe if she can relax in the environment, and she will be in a better position to learn when she’s not so focused on trying not to fall over. It is making us rethink our home design too but unfortunately that goal is further away right now. We aren’t sure if we should or could extensively renovate or possibly build something fit for purpose. We love where we are currently!
Chloe’s now communicating so much more and we have had the fortunate experience of finding a wonderful Speech therapist in Perth to help in between NAPA intensives. Chloe recently was able to convey to her Speechie that she didn’t like her singing. Coming from Chloe this was hilarious! Oh and she also won’t share chocolate. No way. Since she’s gotten a consistent pattern we are able to read what she’s trying to convey and she can answer yes/no questions. Even this relatively small gain is a huge win for Chloe. She’s able to partially fill her role as big sister, frequently telling Kieren ‘No’ with a shake of her head much to his annoyance. She is making so many more attempts to verbalise now and she is extremely interested in how your mouth moves when you’re speaking. With her low vision it often means her face is right in your face and her hands on or even in your mouth but we really don’t care, we’ll do whatever it takes. She is also telling us things by taking us by the hand somewhere. I still get a buzz seeing Chloe actually walk around the house but when she takes me somewhere by the hand (usually it’s food related but sometimes it’s to the front door – Mum take me OUT!!!) my heart melts.
Other big goals for Chloe in 2017? Really orientate herself in her environment: be able to sit on the lounge, get onto her chair at the table, in and out of the car, in and out of bed. All by herself. Really play and problem solve with appropriate toys. Be able to tell us what she’s thinking. Learn to feed herself (this would probably be Chloe’s highest priority – she is such an independent soul at heart and LOVES food). Learn to dress herself and select her clothes. Right now I give Chloe a choice of two or three things but it must drive her crazy. You can see how this goal list all interconnects: she needs better gross motor and fine motor skills, strategies to get around her vision impairment and an easy way to communicate. Chloe has soooo much potential but with so many needs and areas of priority the basic therapy she receives just isn’t enough. That said, I have recently returned to work part time to help this crazy adventure that we are on with this lovely girl (I have been on maternity leave but prior to this I was working weekends and evenings, so we could squeeze as much therapy into Chloe’s day as possible). I’m working perhaps a little more than I’d like to however we will do whatever it takes.
Right now Ryan and I have never been better, and for that we must thank each and every one of you who’s donated or shared this page. A massive thank you to our friend Troy who organised ‘Ride for Chloe’ and all of the riders that cycled about 200km one weekend in October. For us, psychologically the support has been overwhelming in such a literally heart warming way. We simply didn’t realise that so many people cared so much. Complete strangers to us have also showed they cared in so many different ways I can’t name them all within this already lengthy post. We really never expected that.
At the beginning of the year we really were in despair, so grateful Chloe had started to walk but so scared she was really going to give herself a life-threatening injury. So thank you, each and every one of you. The original goal was to change that course – and that’s certainly been achieved. Our broader goal was to change the course of her entire life. We know that by keeping on attending intensive therapy, exploring the use of technology for communication and sourcing appropriate toys for play Chloe is going to soar. I am excited to think of what I might be reflecting on this time next year.
A million thanks again although these words will never feel enough.
Madeleine & Ryan
And this is why I can keep on keeping on.
She is amazing, progressing and learning something new every day. Ride for Chloe is on October 8th to raise funds to continue therapy for Chloe at Napa. If you can share our campaign and posts we would be most grateful. It is the single best thing we can do for Chloe and one visit has certainly changed the course of her year. We hope with relatively regular access we can change the course of her entire life. She has so much potential - everything helps.
Every ones donation's have made a world of difference in only 1 visit to Sydney.Please keep on donating.
So delighted for you guys! Best of luck, gorgeous Chloe xx
I'd live to donate, and will do when I can. But are you in an area with "Riding for Disabled"? The movement on the horse has helped many a child or adult with CP. Just a thought