08-18-2021 01:43 AM - last edited on 08-18-2021 03:31 PM by Janine-RO
It's been awhile since I've been to the forum. That's not because things have been smooth sailing. Rather, my 15 year old daughter has had a series of health issues and it's been quite full on. It started off with a worsening reaction to MSG and she developed anaphylaxis and now has an epi pen. When she was in primary school, she was diagnosed with a condition called gastroparesis which is basically means it takes a lot longer for her to process her foot. This is a physical condition. However, on top of that she has also had rumination disorder, and while this is long standing it was only diagnosed officially last week. This is considered a psychological disorder, and it wouldn't surprise me if it stemmed from long term trauma related to my acute health. We largely have these issues covered in terms of dealing with the specifics. However, she's had a lot of trouble sleeping and can't get to sleep until about 4.00am. She locked away in her room most of the time and the few rare words she says to me have attitude. We're usually pretty close but she's become like a cactus.
We live in Greater Sydney and have been in lockdown for about 6 weeks now. She missed a lot of school prior to that due to being sick and in hospital and so she's dropped off the radar at school and isn't zooming in. I've got medical certificates and school is adjusting her workload but I feel so powerless as a parent looking at this closed door and trying to connect. Given my own health issues, I understand her being angry and having that compounded by covid doesn't help. She refuses to talk to anyone but there is a teacher she's close to. She always dances intensely and I see dance as a way of easing her out of this slump and moving forward.
I know I've given you quite a list of problems there. So maybe looking for help on how to encourage teens out of their room and to connect and also ways to help my husband and I cope better. I must say her older brother has been very patient with her. He's17 and been hit hard by lock down himself but seems to understand she's struggling. Fortunately, she has a boyfriend. I think it's fortunate.
PS As I reached the end of writing this, a little voice reminded me of writing down at least one thing that went well that day. I have tried to get that going with the family before but will try again and try in for myself too. I at least have some influence over myself, although I have my own struggles with being a night owl which remind me of my own human frailty.
08-18-2021 12:35 PM
Hi @Birdwings ,
It's really nice to see your name pop up again here, but I'm so sorry to hear that things have been rough for your lovely girl.
I wanted to share a bit of personal experience here as a fellow parent of a child with complex health needs, because I can truly say that I do know how stressful it can be when there's a lot of health issues at play, especially when it ends in hopsitalisation - that was also my family's journey, but my daughter's issues are now well managed, and she's thankfully not had any really acute issues in the last 5 years.
My daughter also has anaphlactic allergies, along with a range of other chronic conditions (which happens to include a rare GI condition, which is related to her allergies) . So we've also been through that exhausting and stressful experience of finding the right specialists, then having a lot of testing done to unpack exactly what was going on. Without going into too much detail, it's involved a lot of procedures in hospital, a few surgeries, and a lot of trial and error with diet and medication. .
The reason I wanted to share that with you, is to let you know that I think you are doing a truly amazing job in supporting your daughter, in very, very challenging circumstances. COVID also means that people with underlying health issues are experiencing additional challenges- whether that be being anxious about their personal risk and exposure, changes to normal medical appointments, and managing health challenges at a time when a lot of the 'normal' coping mechanism that may help us aren't available.
In terms of helping to cope with lockdown - we do have a space for parents to chat and connect around those challenges here. What we're hearing from parents right now (and what I'm finding in my own household) is that it's really a 'one day at a time' feeling at the moment, because so much of the bigger picture is outside of our control. We also have a space to chat more specifically about home schooling - it's definitely something that is a huge change for most families, especially when we are also balancing working from home, and the grief that comes with losing so many of the social activities and brought us joy and connection.
In my case, we've actually relaxed some of our usual screen time rules, so that my daughter can connect with her friends more online. Roblox , houseparty, and FaceTime are all popular at the moment, and she's often chatting away with her best friend as they complete their school work. We've built regular walks together into our usual daily routine, sometimes I will shamelessly bribe her with a takeaway hot chocolate.
Does your daughter have any outdoor activities that bring her joy? We're finding activities like bushwalks, walks around our neighbourhood, and even silly things like making videos to send to family overseas to be really quite lovely.
I have also found it helpful to connect with other parents and young people living with chronic illnesses. ASCIA is the peak body for allergies in Australia, and they are a wealth of knowledge- their social media pages are also a good way to connect with people who 'get it'.
They also offer really helpful, practical advice, around managing life as someone with serious allergies. It made me feel less alone as a parent, and also helped me to empower my daughter in practical ways- for example, she has a well practiced routine of having her action plan/ EpiPen/ other meds in a little bag with her that she takes everywhere, we chose a nice bag together that doesn't look 'medical' which helped!
@Birdwings I also wanted to check in with you- how are you feeling in such a challenging time? I know that as a parent, I'm really aware of the risk I run of burning the candle at both ends - when I'm trying to support my family, do my best at work, and also cope with the changes that's come with covid and the lockdown. I'm glad that you've been able to come here and share a bit about what's happening - we are here to support you however we can
08-22-2021 09:43 PM - last edited on 08-23-2021 02:30 PM by Philippa-RO
Thanks, Janine for checking in on me and I thought I'd replied but sometimes I end up talking to myself.
I have been more successful at taking care of myself in the latter part of this week. I went kayaking with my husband today and feel so good afterwards. With my mobility issues exercise can be a dirty word and it can feel very cosy at home, even though I know it's not looking after myself.
My patience and perseverance with my daughter paid off and she has been spending more time with me and out of her room. So, I've tried to be available. It can be like leaving a little trail outside their bedroom door waiting for them to come out and thankfully she is responding.
Hope you've had a good weekend.