Tuesday 22 September 2015

Our Little Star

Wednesday, Sep 2nd
At the time of starting this post, Rhona and I had known for two weeks that our daughter Alyssa will be one of the Telethon kids this year. As I write this, she still doesn't know herself yet, and won't for another two weeks. While we have told a few family members and some people in our circle that need to know for work reasons, we have been almost bursting holding on to this. We are so proud of our daughter and we can't wait to yell the news from the rooftops, or Facebook. Whatever. We're also very excited to have a spotlight shone on autism for a weekend. They've never had a child with autism as a Telethon kid before, and we're so stoked that our little girl will be the first one.

It's going to be quite a wild ride. We're about five weeks away from Telethon and we have three publicity sessions to attend in the next eleven days. The first of these is a photo shoot for The Sunday Times, which will be done tomorrow afternoon. Alyssa will be teamed up with a boy called Jayton who is from Cunderdin and has cystic fibrosis. Every year they use one child from the city and another from the country. Jayton already knows that he will be a Telethon kid, and has shot a lot of his promo material already. Alyssa will be spending a bit of time in front of the camera to get her introduction piece together. It's going to be quite a ride.


Thursday, Sep 3rd
Alyssa had her photo shoot for the Sunday Times today. We met Jayton and his mum at PMH this afternoon and the photographer snapped away at both kids. There was a mix of solo shots and the two of them together; some were taken in the hospital lobby, some in a park down the road. 

It's a little tricky telling Alyssa what's going on with these things. We just keep sticking to the party line that she's in the top five spots for the kids who have been nominated for Telethon, and these event are like tests, or auditions. I think she may start putting the pieces together, but hopefully we can save the surprise for her. 

She did so well today too, as did Jayton. They look great together and I think they will enjoy their experience as Telethon's Little Stars. Alyssa rose to the occasion and pulled pose after pose and smile after smile. There was a little help from us behind the camera to get those smiles though! Jayton's cheeks were getting quite sore by the end of the shoot. He he he...we noticed him moving his mouth and rubbing his face a bit. 

Tomorrow morning we're all off to the Channel 7 studios. Not really sure what we're in for yet. It shall be an interesting experience at any rate.



Friday, Sep 4th
Well, we finally got to tell Alyssa the big news today. It was a huge morning full of photo shoots, interviews, Fat Cat and nosing around the studio. Jayton and Alyssa got to read out the weather in front of the green screen and sit behind the news desk too! One of the Channel 7 reporters, Blake Johnson, was going to be interviewing them, and he said that he wanted to ask what it was like to be the little stars of Telethon. The promo people realised that it was going to be too difficult to keep it a secret any longer, and so Rhona let Alyssa know. She was very excited and it sparked her right up. The idea had been to announce the news at Alyssa's school and record her reaction, but that's the way it went down. 

As you can imagine, standing still and smiling can get quite monotonous and challenging for any kid, let alone one with autism. The first task for the kids was posing for some video footage of the kids to use for Telethon promos. Alyssa needed a fair few movement breaks and a lot of help to stay focused on the camera. If someone walked nearby or said something loud she would turn in their direction. She found it difficult to follow some of the instructions of the crew too, but got through everything in the end.

When the time came for Alyssa to do her interview with Blake, she went through on her own. They were quite happy with how she did, and said that she was quite the chatterbox. It's going to be edited together for a news item on the day that she is announced by The Sunday Times as the CBD Telethon kid. Can't wait to see it, he he he...


I think that Alyssa's highlight of the day was meeting Fat Cat. She also enjoyed using the 'God button' in the control room when Jayton had his turn reading the weather. They both had fun messing around with Blake and the newsroom camera too. After a brief interview for the West Australian there were more photos to be taken, this time with Fat Cat as well! 

We arrived at the studio at 8:45am that morning we didn't leave until half past midday. What a busy start to the day! As an extra special treat, we let Alyssa pick out some new Lego on her way home. She grabbed a few Simpsons mini-figures and was stoked to get all new ones; no double ups! She was particularly stoked to get Bartman!

Anyway, we probably won't have anything more to do for Telethon until the 14th, when we'll be heading back to studio. Some of the Channel 7 crew may come out to our house or one of her therapy sessions in the meantime. We shall see. On September 20th, Alyssa's announcement will appear in the Sunday Times as well as an article on the Channel 7 news. Exciting stuff, huh?



Wednesday, Sep 9th
We've had a little reprieve from any Telethon duties since last week. Today is going to be a pretty big day though. There's a camera crew coming to the kids' speech therapy session this afternoon to film a little footage. After that they're coming back to the house to do some interviews with Alyssa and get a bit of what her day-to-day life is like on film. They'll also film Rhona and me, so Rhones is rushing home after she finishes at work. I hope everything goes well. 




While we all were in the car yesterday, Rhona got a call from a journalist at The Sunday Times. After interviewing her for a few minutes, she asked to speak to Alyssa. Rhona warned the reporter that she'd been sick for a bit and might only give one or two word answers, but she ended up being quite chatty. Considering Alyssa was basically non-verbal until the age of five, this was an amazing moment for Rhona and me. Both of us welled up a little, full of pride for our little girl as she talked about her favourite things. She's come so far. 


Thursday, Sep 10th

Yesterday was a pretty packed day! Once I picked up Alyssa from school, we rushed home to have lunch and then hit the road. Lachlan and Alyssa have speech therapy every second Wednesday at Sensory Connections and that particular session was being filmed by Channel 7 in preparation for Alyssa's Telethon promo package. It all went pretty smoothly, and was actually one of the best sessions the kids have had with their therapist, Sarah. It was weird having a camera and boom mic follow everything, but it didn't phase the kids. Lachlan was quite interested in the equipment and seemed to enjoy being involved. They interviewed Sarah afterwards too, and she told them what our goals in speech therapy were and how she was helping us. The great thing about Sarah is that she lets the kids direct the session and guides where she needs to. It's a style of therapy called Floortime, that Rhona and I just love. The room at Sensory Connections is fitted with roof swings, gym mats and foam blocks for lots of physical activity. We tend to act out various scenarios using role-playing, but the communication between us all is paramount to everyone knowing what their part is. The kids have come a long way since they began these sessions together at the start of the year.

After that was done, the camera crew met us at home where they filmed the kids playing on the trampoline and running around the backyard. We even played in our not-quite-completed therapy studio for a bit too. They got some footage of Alyssa building Lego in her bedroom, and tried to interview her a little at the same time. Unfortunately, she got pretty focused on the Lego and wasn't very responsive. We tried to capture her singing Roar by Katy Perry (which she loves), but that was a little hit-and-miss too. There was a great moment when Zappa ran and sat next to her while she sang, which I hope they use. Rhones got home from work just as they started to set up our lounge room for the parent interviews. Again, Lachlan was fascinated by the lights and recording equipment. He loved looking at himself being recorded on the little portable monitor, and was in awe of how bright the lights were. 


They interviewed Rhona and I separately, asking questions about autism and Alyssa's early years. I felt like I was a bit of stammering mess at the start, but found my groove as the recording went on. Rhona felt similarly afterwards, fearing that she'd waffled on a bit too much. Time will tell, I guess! As the crew packed everything away, Lachlan watched on enthusiastically. He has since become very keen to be as involved in the Telethon journey as much as he can. Well, the next thing on our schedule now is Monday morning at Channel 7, where Alyssa and Jayton will film promo spots for Telethon.




Tuesday, Sep 15th
Yesterday morning Alyssa had a big session of shoots at the Channel 7 studios. There were little moments of her blowing fake confetti to the camera (which will be CGI'd in later), catching said fake confetti, saying the Telethon phone number and thanking WA. She recorded some shots by herself and some with Jayton. Both kids had to address the camera on their own, say their name and talk briefly about themselves. We got to the studio at 8:30am and by around 10:30am or so, the kids were done. Alyssa had worked really hard and was in much better form than the previous Friday shoot. She had taken medicine to help her throat infection, and it seemed to have done the trick! The praise she was getting from the crew, the staff and Rhona and me was going to her head a little bit. After one break, she swanned back into the studio and announced that "your superstar is back!" He he he...cheeky little thing. The novelty of seeing herself on TV was also something she enjoyed, and at one point, the cameraman (Mike) played back some of the footage they'd shot earlier. 


While Jayton was finishing up some shots on his own, Alyssa and I went back into the dressing room and relaxed. Monika Kos from Today Tonight happened to be walking through and stopped to introduce herself. She was really lovely, and told Alyssa that after being on Telethon she'll be an expert at TV appearances and film/photo shoots. 

After the kids were done, it was time for the adults to be interviewed, which meant the mums, and a medical expert for both families. We had arranged for Prof. Andrew Whitehouse from the Telethon Institute to speak about autism for us. He heads the research team for autism at the TI and is just a fantastic guy. We've met him several times in our travels and getting him to appear on camera as part of our team was very exciting. Jayton's family had asked a nurse from PMH to talk about Jayton and CF. She'd known them for years and was lovely enough to come into the studio on her day off in full uniform, croaky throat and all. 

Alyssa and Jayton sat in the dressing room and flicked through the TV channels while all this went on. They got to talk to each other a bit too, discussing their various interests and TV shows. It was nice for them to have a little down time together. No doubt they will be seeing a lot of each other during the next few weeks. Once all the adult interviews wrapped up, Alyssa was asked to go back in to do some more shots. She was pretty over it by that point, but they managed to get a few more things in the can. It would have been around midday and everyone's tummies were rumbling too! 

We left knowing that there would be a bit of a break before any more Telethon duties popped up, which we were thankful for. This Sunday, Alyssa's announcement story will run in The Sunday Times and be on the Channel 7 news! She should also be in Monday's West Australian too! We'll finally be able to tell everybody that our little girl is one of this year's Telethon kids!


Friday, Sep 18th

Yesterday afternoon we were contacted by Today Tonight, who were looking to film a "happy family" for a story they were putting together on parenting author and educator Maggie Dent. Unfortunately, Rhona was going to be attending an interschool sports carnival that the school she teaches for was competing in, so she couldn't be part of it. They wanted to come over at 2pm, so we needed to get Alyssa home early. Coincidentally, her school was having their own sports carnival, so Lachlan and I went over to watch the proceedings.

We left the carnival early and got home a little after 12pm with
 enough time to feed ourselves, tidy the house and wind down a bit. Just as well too, because the camera crew and reporter arrived at 1:40pm. They wanted to interview me first, so once again, our lounge room was set up and cleared. Both kids took their iPads down to the bedrooms and Zappa stayed with Lachlan. They just wanted to talk about autism, the diagnosis process and what we believe helps make kids happy. I was even asked about Alyssa's experience being the Telethon kid so far, and how we all felt as a family. Syan, the reporter was quite surprised to learn that Alyssa would be the first Telethon child to have autism. After a few hiccups involving noise from the kids, we wrapped the interview and headed outside to film Alyssa and Lachlan playing together. 


They both turned on the charm and hit maximum energy level, while Gail the camera operator run around them. She even climbed onto the trampoline while they bounced away. Alyssa offered to show them our little (incomplete) studio/therapy room. Lachlan got down to swinging on the indoor swing and Alyssa played with the fishing game. Then they hit the swings! The last thing the crew wanted to film was both kids running up and hugging me. They were quite enthusiastic about this, but I suspect they just wanted to knock me over, especially Lachlan. Even Zappa tried to get in the action. He became quite popular with the crew too, with sound guy throwing the ball around a few time for him. It was a pretty hectic day for the kids, but they both coped beautifully. Once the camera crew left, they could really relax and wind down. So proud of the way they're coping with these sessions. Not sure what's next for the Bolgies at this stage, but we can't wait until Sunday!



Sunday, Sep 20th
Today was the day that we have been hanging out for! The Sunday Times announced Alyssa as this year's Perth metro Telethon Little Star! I managed to grab a copy of the paper after my gig last night. I snapped a photo of the article and sent to Rhones, who immediately began bombarding social media. We're so proud of our little girl and so relieved that we can actually share this amazing news with all of our family and friends. Since last night we have gotten so many wonderful messages of love and support for Alyssa and our family. We are very excited about the Telethon weekend, and can't wait to experience it, all the while educating WA about autism and epilepsy. 



We have no doubt that the next few weeks will be very busy for us, but we're up for it. We're also going to slip in a coupla days down south to meet our newest family additions as well. The school holidays start next week. What perfect timing! Time to hold tight and enjoy the ride. 

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