Keeping it nice

There has been no blabbing for quite a while now. It is actually over 2 years since my last blab. Not because things have gone particularly pear-shaped for us here. We are fortunate to live in a stable part of the world and have been spared from the worst of the pandemic. I know it has still devastated many people here, and it is not over yet, but on the whole we’ve fared incredibly well.

I have overcome my global feelings of guilt in these crazy COVID times and although it does feel a bit indulgent, I have come around to the idea of writing about our life with Frankie again now. It is after all just my perspective, and it has been brewing for a while..

When the news of a COVID 19 first hit, last year, we were pretty worried about how Frankie would fare in a potentially overwhelmed hospital system. It was such a strange time for everyone, not knowing how things would pan out. Talk of having to choose who to ventilate overseas was fairly disturbing. We knew we needed to keep our Frankie out of hospital, so when it started we went into lockdown early. We took it pretty seriously and spent a good part of the year doing what we were told, staying home..

Staying home suited us anyway. We had recently moved into an accessible property and lived in a somewhat communal household, so we weren’t alone in our isolation. I had my pottery wheel and people upstairs who were not as easily annoyed as my immediate family was, and generally much nicer to me. So I had people to chat with, share the shopping, and play board games with. There was a fair bit of bananagrams going on. Ideal really..

Fortunately for us though, and before we all got bored and sick of each other, it was all over. The lockdown was relatively short lived here in Brisbane. We found that Frankie was thriving in this new-normal COVID environment. We were together a lot which he seems to enjoy. People were washing their hands.

This was to prove to be a big change from the previous year, which was non-stop.

I had spent most of my days working on Frankie’s transition to the National Disability Insurance Scheme (NDIS). It was a full time job, and not for the faint-hearted. Frankie had well and truly outgrown his seating and was squeezing into most equipment, so it was getting hard to get him around. I was feeling fairly worn down by the delays and paperwork involved. Although it took them over 18 months to get to us, they did finally come through with the goods, and in the end were very grateful for the plan we had for Frankie. It was new wheels all round.

Our Multivan’s wheelchair modification was on its way. Frankie was kitted out with a new tilt-in-space wheelchair, bath chair and all-terrain stroller. My back was feeling better already in our wheelchair friendly house filled with equipment.

My other focus had been elaborate holiday planning. Driven primarily by a sense of urgency around traveling with Frankie while we still can.

Frankie is 8 years old now, and tall, weighing in at around 25kg these days. I told myself that our future holiday options were diminishing. That we are likely to be limited to where we can use a hoist, and that airline travel will be pretty much written off as inaccessible to the likes of Frankie.

So as a holiday monster, who strongly believes in having something to look forward to at all times, I devoted all my pre-COVID spare time researching potential destinations. That, and encouraging others to join us. We had finally embraced camping in a big way, and found that with enough hands it was possible to get to most places, and to have a good time.

Our trip to Lady Musgrave Island on the Great Barrier Reef with a group of friends over Easter took a lot of planning and was challenging at times, but turned out to be a truly memorable adventure.

Then there was a road trip to the snow from Make-a-Wish in July. We drove through country NSW and the Blue Mountains to the snow, spending a week in the van with Jonathan making us listen to Tom Petty, and eat too many pies. It felt great to be on the road together.

Frankie was well throughout it all, and the best little traveller. He was all rugged up for the cold weather and seemed completely relaxed with it all. He took naps as we carted him around the place, we were feeding him on the go, visiting farm stays and museums and stopping at bakeries without any complaints from him. He seemed happy to be part of it all.

A real highlight was recruiting Disabled Wintersports Australia (DWA) during our stay in Thredbo. They gave us a few days together on Mt Thredbo with the amazing Craig. The amazing Craig took Frankie up and down the Mountain in his sit-ski and provided us with some lessons too. I never did manage to look comfortable on the slopes, and very nearly injured my spine, but it was so beautiful in the mountains and the weather was perfect. It felt pretty special.

Then in the summer there was more hard work, but a lot of fun had beach camping at Adder Rock, on Stradbroke Island with friends. It felt like we were on a roll, and it was a good year for this holiday monster.

Looking back now it was a good thing that we did it while we could pre-COVID, and that Frankie remained well for it all. We really did have a good time together. It was probably also a good thing that I was forced to stop for a while as the holiday budget was in deficit.

Frankie’s main support worker’s name is Carly. She’s been around for a couple of years now and has become a vital part of our Frankie team. Carly is a super nice, animal loving, brainiac. At 20 she had already graduated with a degree in Speech Pathology and was starting a PhD. on speech development in paediatric brain injury no less. Mature beyond her years, and a lot of fun. She is however, super busy and destined for bigger things.

We are excited that Carly is on board for now, and had agreed to be trained as Herc’s handler and work intensively with Frankie and Herc on communication. That included using Herc as a motivator for Frankie’s learning with the use of switching devices. Frankie has demonstrated reliably that he understands cause and effect, and using switches with audio-recording commands for him to choose from will hopefully provide a gateway for him to access communication technology in the future.

With no precedence of assistance dogs at Frankie’s Special School Narbethong, we had been working on the idea of Herc attending with Frankie for over a year. Now, with Carly in the picture, we finally made a breakthrough. Narbethong agreed to a 3 month trial with Carly handling, and taking responsibility of Herc at first, in order to support his teachers. The plan was if the trial was a success for Carly to step back and allow his teachers to take over.

Smart Pups original handler Bec was sent down for some more training. We had felt quite overwhelmed when Herc had first arrived on the scene. I allude to this in the year of the dog Where I go into great detail about how challenging we found it. Now I must admit that Herc is an indispensable part of the family, and that I have turned into one of those weird dog people that I complained so much about.

Herc has matured, and responds enthusiastically to any training. However he is quite sensitive to any change in routine, and refused to get into any vehicle other than our van. With the van being modified interstate he politely declined a ride from everyone. It proved to be a significant hurdle, but we got him there eventually and he was perfect. Narbethong is a small Special School for the vision impaired. In our experience the staff there are completely wonderful and incredibly kind, so it didn’t come as a surprise that it was a success. It wasn’t long before everyone knew Herc and Frankie.

His classroom attendance for the rest of the year was record breaking for him. Personal hygiene was greatly improved by the pandemic and so he wasn’t picking up the usual colds or viruses that would set him back over winter. With his swallowing being so easily affected by any changes, a minor cold or throat infection would usually take him a couple of months to get over and mean time off school.

We had been fortunate that we’d had a good hospital-free run. Frankie hadn’t had any major seizures since the original brain injury 5 years earlier so it came as a bit of a shock to us when he started having seizures again in June last year.

Fortunately this turned out to be relatively straightforward admission and he came out of it on a new seizure medication regimen that seems to be doing a better job. He was more alert, and seemed to be fatiguing less easily on his new meds. It’s likely that Frankie was having a bit of a growth spurt. These neuronal changes were probably brought on by these new cells having the Angelman syndrome tendencies for seizure activity. It also led to some developmental growth, and neurological improvements. Always subtle, but he had a great school year, attending three and even four days a week. This has had a dramatic effect on his engagement generally. It seemed to us like he was concentrating more and as a result wanted to connect more.

Frankie has come a long way since his brain injury, but it still has had a pretty devastating affect on him. We have accepted that he has significant limitations and is medically complex. He is permanently vision impaired and immobile, and that his poor head and neck control will hang around. We don’t expect this physical impairment to improve much. In fact it’s more about keeping him comfortable and minimizing the damage that immobility and gravity is having on his body now. His hips and knees are not weight-bearing and starting to deform as his tendons and ligaments contract from lack of use. His spine is curving as he grows and hip is migrating out of its socket. Hip and spinal surgery is being debated at the moment.

We expect him to remain nil orally and tube fed indefinitely. Which obviously isn’t a good thing, but it’s his reality and we have accepted that. We do however hope that he will continue to make improvements in other areas and don’t want to place limits on what he can achieve. Being so young will hopefully allow for some neuroplasticity, and cognitive improvements post brain injury. Frankie shows a willingness to engage. We have seen that with regular access to a familiar learning environment at school and regular input from us and support workers at home, that we can maximise this.

Fortunately for us, Frankie has a way of attracting super nice people. There has also been a lot of neighbourhood love around us. So when our upstairs friends moved out we were a little worried… As luck would have it, the amazing Carly was looking to move out of home with a couple of her amazing young-people friends. They moved in soon after and we have been enjoying the 20-something good vibes from above, ever since. It has allowed us to like young people again, and since they are all super nice, to recruit them as Frankie’s part time support workers. So far it’s working a treat and Frankie has been listening to the comings and goings of our new upstairs neighbours with great interest. Evie seems to be enjoying all the 20-something fun too.

Then a few months ago things took a dive. Frankie came down with a virus, which led to an aspiration pneumonia and a pretty rapid decline. He managed to stabilize on high-flo oxygen, and after much fuss and a 3 week hospital stay made an impressive recovery. However, this was our first hospitalization with an aspiration pneumonia, and it was quite scary how quickly he could deteriorate. It was also pretty evident to us that we needed to advocate for him while he was in hospital, because on paper Frankie doesn’t look so great. He can present as a fairly complex medical problem and when he’s so unwell it’s not always clear to everybody how far to go. We just assumed all the way, but it’s not quite so straight forward at the pointy end of our health system.

Although Frankie met the criteria for ICU, we waited quite a few days for a bed that didn’t ever appear. There was no COVID crisis going on at the time but the hospital was full. He received excellent care, and they kept a close eye on him but I found myself answering questions from an ICU Consultant at 1am in the morning about Frankie’s quality of life.

So what does his normal day look like? Does he go anywhere? What can he do? Do you have any other children? Of course there were other relevant questions, but these are the ones I remember. The ones that don’t quite sit right. It felt like he was trying to put a value on him and I found myself talking Frankie up. I was telling him that Frankie was the greatest, had friends and family that loved him, had an assistance dog, excellent birthday parties, has travelled overseas…

When I asked him whether a child with an intellectual disability is assessed or treated differently to a neuro-typical child, in a very roundabout, off the record way I took his answer to be yes they are. It’s not something many in his position would admit to, and I did appreciate his honesty.

Nobody is going to deny Frankie medical care when he needs it. It’s an amazing system we have here, which we rely heavily on and we are incredibly grateful for. However, we have come to understand that society on the whole doesn’t really know how they feel about the likes of Frankie. In my experience it seems that many people struggle with the idea that a person with a complex physical and intellectual disability can lead a meaningful life. Or that theirs can be seen as a good life, and justify many of the lengths that are required to maintain it.

Frankie can’t answer this for us. All we know is that we have a good life with him. Good enough to want to share it in this blab anyway. I don’t mean to sound overly defensive, but Frankie does have an awful lot to offer the rest of us. Anyway…

Are you a zen master?

Do you never have a bad word to say about anyone?

Do you have a pet pig called Peggy?

Didn’t think so.