So, life with Frankie now. It’s been 9 months since Let’s Be Frank and over 18 months since Frankie came home from hospital after he sustained his brain injury. Thankfully he’s remained seizure free and managed to take a pretty drama free approach to his recovery. It is very slow going though. This is probably a lot to do with the fact that his neurons were not really on speaking terms before the injury and the Angelman Syndrome has been a pretty limiting factor all round. So we haven’t seen great improvements in voluntary movements of his arms or capacity to hold his head up. Without adequate head control it is hard to make much progress with his swallow, and eating is still out of the question. He does enjoy tastes but his nutrition and feeding is still via a gastrostomy tube. His swallow is always a source of concern as from time to time he finds it hard to swallow his saliva, which is obviously not a good thing.
His lower limbs are more under his control. He tends to use his pins to do his best work and likes to seek us out with his feet. He can even operate a switch toy, which we think is pretty clever.
We were told after the injury that Frankie had cortical vision impairment from the brain damage, meaning his optic nerves and eyes function normally but his brain now has difficulty processing the visual information that it receives. He’s never been very good at multi-tasking but we noticed after the injury that processing anything visually seemed to be a bit like hard work. If something familiar appears in his line of vision he will try to focus on it and may track with his eyes but it’s not easy for him to do. If he’s thinking about trying to move his legs, is listening out or feeling the vibrations of anything nearby then he isn’t likely to be trying to take anything in visually. We encourage him to track familiar objects in the hope that these visual exercises might improve his capacity, but, the jury is still out on how much he can actually see and only time will tell if it improves.
We do spend a lot of time thinking about how he might be processing information with this visual impairment and it’s still hard for us to get our heads around the idea that he’s vision impaired. It is a bit of a heartbreaker really.
He responds most to a routine and I find we spend a lot of our time around the house together just listening to stuff. You have to pay attention, but you can tell when he registers a familiar sound. He knows the everyday sounds that our neighbours make around us – Dave’s whistling when he picks up the mail, Ai’s familiar laugh is registered, the sound of little kids that he knows jumping on the trampoline – he listens to these quite purposefully, and you can tell that he knows them.
Fortunately for Frankie we live on a street with a fair bit of activity and passing pedestrian traffic so there are different voices to listen to as well. There’s plenty of bird life. The chickens and crows are a constant, as well as the magpie family who live outside our front door and seem to know everything that goes on.
We hear the productive sounds of Daryl and Taiki making stuff, bikes, cars, trucks and the sound of constant construction going on around us. And of course when the weather is right there is the flight-path overhead, which is hands down his favourite. So it’s no surprise he seems quite occupied by his auditory landscape.
He has recently started one day a week pre-prep at Narbethong which is a pretty special Special School with a curriculum which caters specifically to visually impaired kids. I think Frankie and I were both a bit unsure at the idea of such a big day out at first, but after a fair bit of awkward hovering by me.. “and you do realise he can’t really..?”, they kicked me out (just like they do at a regular kindi) and he was fine. He seems to be getting into it now and is even making friends, which is apparently pretty exhausting..
For now he appears to navigate his world quite happily. Listening and feeling his way. So we are trying to give him plenty of reasons to engage with us. Despite being non-verbal and having significant physical barriers to getting amongst it, he does try to connect. He’s remarkably social and this subtle ability to communicate is a constant source of amazement to those of us who spend time with him.
He has a fake cough, which I’m sure he uses to get attention, particularly if you leave him alone for a bit too long. So he’s quite polite. The smallest gesture or touch is pretty much always met with a smile, but there are many different types of smile. When something’s really funny he will give us a toothy grin (bucky). If you surprise him with your presence, he will jump and then give you a big goofy smile. If he’s not looking toward you but knows you’re there it is usually a tiny corner of his mouth in acknowledgement or a slow and luxurious smile, depending on his mood.
He does have distinct moods. Sometimes he’s just a bit grumpy when he wakes up and is not impressed by our attempts to win him over, but never for long. When he’s not being completely serene and looking blissful (his favourite around the house face) he can be excited and bursting with enthusiasm while listening to a bunch of noisy kids, as if he’s playing (on the inside). If a toddler is having a tantrum he gets that smug look that all kids get when other kids are behaving badly, and I have to remind myself that at the end of the day he is still a kid, and appears to know this.
He’s hard to describe, and as my mum has said in the past, and I often think, “You couldn’t make him up if you tried’.
So despite being completely dependant on us for everything (he can’t roll over, adjust his position or scratch a mosquito bite) most of the time he will end up being positioned wherever the action is. We are all generally on high alert for any change in air temperature or biting insect, partly because we feel so bad if he’s been uncomfortable and can’t alert us to it, and partly because Evie does regular checks and will make sure someone is made accountable for any visible sign of neglect i.e. red mark or a bite. So he has an amazing amount of pull really.
He is very good at letting us know how much he appreciates all this effort though and being so sweet helps to keep us so attentive. We’re pretty confident that he loves to feel the wind in his hair and to be held and squeezed.
Although it looks quite unpleasant, he loves getting his ears and hair picked at and preened by his sister on the couch. So we try to accommodate these likes as much as we can by carting him around with us but he does weigh almost 18kg these days, which is starting to slow us down.
As well as being instructed in Frankie’s physical therapy to improve his function, we constantly need to adapt to his growth and changing needs for equipment, as well as managing his seizure medication and nutritional needs. As many a carer will know, it’s all part of the deal and it keeps you busy.
Fortunately we have access to some pretty fabulous therapists and are given a lot of help and advice, which is great. However, it does feel like the advice is never-ending, and sometimes the better the therapist (and the advice), the harder it is to hear it. Because I know I really should be doing that, and there is always going to be a tendency in me to think that we’re not doing enough for him.
If only I..
Did more of those visual tracking exercises, his sight might improve;
Got him into the standing frame more often, his bones might be less fragile down the track;
Put his AFO boots on for longer, his feet might not drop;
Used splints more regularly, it might prevent contractions and the need for botox injections;
Played him more classical music; Had more time to do more about the state of everything, the refugees..it is never-ending.
We will keep at it, and always hope that Frankie makes some significant improvements but I feel like that hope for change can’t be our primary motivator. There needs to be a fair bit of acceptance of our situation, and of Frankie as he is, because all this hoping and not achieving (those neurons again) will wear us down. Besides, what he actually is, is pretty awesome. He’s so happy just hanging out. He’s not interested in being carted around town with a punishing rehab schedule. Or maybe its just me whose not interested in doing that? Who knows…we will never know.
These days I basically set some therapy goals and try not to beat myself up too much. So I will always try to do stuff I think we both enjoy. I try to get him in his therapy swim spa and/or out for a walk, or a ride in his trailer and involve as many good and willing people in his daily routine as possible. So we’re doing OK with the acceptance stuff. We think he’s the greatest (obviously) but I find the tricky bit is the inter-face with the outside world.
Ever since we joined this mind-bending world of disability we’ve had access to an amazing amount of support from the different disability services. It’s always been there, this information and experience sharing. I guess what changes is my receptiveness to it, and my desire to get out there amongst it. Sometimes I’m just not interested. I would prefer to bury my head in back to back episodes of a French crime series. Sometimes I like to forget about the facts or challenges of our situation all together, and there were five seasons after all, and it was awesome. Frankie doesn’t look too different yet, too disabled. I don’t have to deal with all those rude people out there just yet. I figure I’m entitled to a bit of denial but I have learnt quite a bit about myself and my attitudes toward disability in the process.
I tell myself that I’ve had very little exposure to anyone with a disability before, but that’s no excuse. I’ve realised that I had no idea, and so I still cringe when I think of how I responded to an AS parent who offered to introduce me to her child when Frankie was newly diagnosed. He looked very like any other baby of that age and I told her that I wasn’t ready to meet her child yet “it might be a bit confronting”. I know how offensive and stupid that comment was (sorry!). I’ve said plenty of insensitive things and I don’t expect others to always say the right thing either. We need to learn from our experience with Frankie and also allow the people around us get used to this, because we’re only just doing that ourselves.
Lately I’ve felt ready to think more about some of the bigger picture stuff, the long term challenges that are no doubt ahead of us and have read up on disability in more depth. I even dragged Jonathan along to a Mamre workshop on building social capital by the very enthusiastic disability advocate
Al Condeluci (which was actually pretty cool). He talked about how, with all the effort and resources that go into fixing people with disabilities, perhaps we should try to put more energy into fixing societies’ attitude toward them. Perhaps if society accepted people’s differences (better still valued them) then there wouldn’t be so much need to prescribe the care. Of course we need the respite support and the medical model bit, but the meaningful life bit requires more. It’s a complex issue I know but sometimes it’s good to hear it put simply by a straight-talker like Al.
Frankie and I have also been listening to a LOT of podcasts. It’s something we can do together. I stumbled upon The one in a million baby and listened to some of the podcasts about different people’s experiences of having a child with special needs and how they came to cope. They were so honest and insightful and a reminder of the importance of being as open about our experience as possible, with ourselves and others. Jonathan will no doubt wonder why I need to be so open and honest but, oh well.
I’m never going to be able to write like Heather (a special needs parent and writer who doesn’t feel the need to use brackets) and who captures everything so beautifully in her writing. However, I can encourage people to read her essay super babies don’t cry.
I recently started reading a book by Andrew Solomon called Far From The Tree. It’s a heavily researched tome on parenthood and identity. You can search for your particular life challenge by chapter i.e. schizophrenia, crime, transgender. All of which are a result having children and probably worth reading at some point. There is a hefty chapter about disability which I found I could relate to.
He talks about what a wide range there is in the spectrum of disability, and interviews parent’s of children with multiple severe disability (MSD) about their experiences. It was the first I’d actually heard of this MSD which refers to people with an overwhelming number of challenges being unable to control movement, locomotion, verbal thought and self-awareness. Sounds completely depressing but he found that many parents found ‘beauty or hope in the existence, rather than the achievements, of such a child. Most parenthood entails some struggle to change, educate and improve one’s children but people with MSD may not become anything else and there is a compelling purity in parental engagement not with might or should or will be, but with simply, what is.’
Frankie may not be quite in this category – he certainly has a personality and demonstrates cognition and attachment. However, when reading about the experiences of families living with MSD there are a lot of things specific to their experience that I could relate pretty heavily to.
He talks about the labour intensive nature of parenting a severely disabled child becoming routine, having a rhythm and how human nature adapts to a rhythm. I can relate to that. Frankie’s care is labour intensive but his routine is surprisingly relaxing. I try to keep it simple most of the time and can just plan my day around Frankie’s needs. It slows me down. I no longer go out to work, deal with traffic in commute, Evie makes her own way to and from school and most of her activity is local or accessed partly by grabbing lifts. There are not the behavioural problems or bad attitudes to deal with. He’s not unpredictable or violent or going to tell me I’ve ruined his life down the track. It’s not as bad as people might think, and this was identified by these families too.
He talks about how isolating the experience can be. Yep, I can relate to that. Most of my friends have busy lives, they are working or juggling their kids busy schedules and dealing with their own challenges. Everything’s changed for me here, while they are going about their own lives as before. I do feel a bit like a shag on a rock sometimes.
He talks about how relationships can be tested (yes indeed). Not all of them have made it through intact but most are probably stronger.
Also, that the experience is aided by a belief that you are still capable of shaping a meaningful life for yourself and your family (absolutely, working on that at the moment).
And finally, a belief in something bigger than one’s own experience. We’re not religious people, but I think recognizing how insignificant we actually all are in the big scheme of things is pretty helpful. Jonathan may think Professor Brian Cox is a bit of a ponce (his words), but I find him really quite appealing and do like to listen to him talk about the universe and stuff.
It helps a lot that I have a mum who arrives every Tuesday, without advice but full of warmth and ready to do the washing. Sometimes I’m even still in bed when she arrives, and she tells me to stay there “what have you got to get up for?”. But I know I really should get up, that I’m pathetic because she has been on public transport for over 2 hours. You get the idea.
I do feel lucky, and grateful that we have Anna, and that my in-laws have factored us into their weekly routine as well. And that, despite being grandchild number 22 or 23, and the least likely to get a PHD, Frankie has a special relationship with Jonathan’s parents and is bragged about just as much as the rest of them.
So in the words of David Foster Wallace “we are the rulers of our own skull-sized kingdoms”
I do everything I can to keep my shit together. I remind myself that I do have a lot to be grateful for. I will even go for a run when I get a chance these days. I don’t drink and still take my happy pills, even though I’m pretty sure I don’t need them anymore. Manish and his mindfulness training and chats have helped, and even though I don’t really practice it that much, I know it’s there and use the mantra.. Life is pain, feel it…all the time.
I know I don’t sound like I’m much fun to be around, but thankfully I have a handful of close friends who listen to my crap. I also try to listen to their’s and they still make me laugh, which is a good sign apparently. There is the prolific making of stuff, which gives me purpose and stops me overthinking things. Even if it is craft and pottery (I’m taking lessons, so it’s getting better). There are always plenty of projects so I’m occupied and fine, really.
So, we like visitors, and if you run into me you don’t need to feel awkward because you haven’t been in touch for ages or pretend you didn’t get the office email about our de-railment. It’s fine, you can ask about Frankie, and I will be happy to chat about your stuff too. I promise I will try to be normal – but only if you try to as well.
On the bike and getting some wind in that hair.