I am the primary carer to my son, who has a severe disability; and I couldn’t help but wonder if there were any other carers in the GWJ community.
This is my first attempt at creating a thread so I apologise in advance for everything that follows.
I know ‘carer’ can have a few different meanings; I’m talking here about people who care for a family member, etc. in a personal or private capacity. (I’m not talking about professional carers, nor am I talking about the type of caring that is seen in a typical parent-child relationship.) In my case it is my son that I care for, but a caring relationship can come in lots of different forms so I’m definitely not saying it needs to be a child who is being cared for.
I thought that perhaps other people in somewhat similar circumstances might want to get together to share stories, maybe give each other advice, and just provide some form of support to one another. My opinion is that being a carer brings with it both positives and negatives, and perhaps this thread could be a place to talk about both of those aspects of the role.
Here’s a little more information about me, and my situation, to get the ball rolling. My son is a little over three years old and has had significant problems with his health since birth. We’re currently in the middle of working on a ‘formal’ diagnosis but there’s no question in anyone’s mind that he has severe cerebral palsy, so his issues are both physical and intellectual. He is capable of doing very little independently, so he needs help and support for a lot of everyday tasks, and that’s how I spend a significant portion of my day. Oh yes, and he has a lot of medical/therapeutic appointments, so that’s something else I get to spend a lot of my time on.
His health is always a bit up and down, but at the moment - broadly speaking - he’s doing ok. He has epilepsy as well and we haven’t had any significant activity for over a year now so that’s amazing. He was recently put on some new medication that he didn’t react well to at all, but he’s off that now and he seems to be back to his usual happy self which is a relief.
Speaking personally, these last few years have been a steep learning curve as my son’s issues came completely out of the blue. One of the most recent changes to my life is that I’m taking leave from my work for the next couple of years. I had been working part-time, gradually reducing my hours more and more, but that just wasn’t working so my wife and I recently decided that it was time for me to cease being in paid employment, pretty much entirely.
Anyone feeling like they can identify with anything I’ve said here?
Asterith said, "Just an FYI, Stevintendo is not crazy."
Switch: 7344-0096-1719
PSN: Stevintendo
XBOX: Stevintendo
Yeah, my wife is primary caregiver for our 7 year old son who has autism and intellectual disability. Cognitively he functions about on the level of a typical 10-12 month old. Physically he has asthma but nothing else. The asthma is not well controlled since it's hard to get him to comply with inhalers, much less nebulizers.
Anyway, I can tell she's usually emotionally drained when I get home from work each day. I typically make her leave the home to grab some dinner and a respite and I take over with my son. At that point though, most of the hard stuff (bathing, feeding, cleaning, cooking) is already done.
If she stays at home, she tends to be irritable and stressed out and it leads to arguments.
To be honest though, that's not entirely due to the stress of caring for her; she's biologically predisposed to being in a bad mood around that time of day just like I am in the morning.
Day to day stress is tolerable with only a few exceptions, but the hardest thing is worrying about the future.
I can identify with a lot of what you're saying. For a long time we had problems getting my son to take all his medicine, there was a good stretch where he could have only been getting about half his dosage, which isn't good. Unfortunately our solution wouldn't be of any use to you. My son is PEG fed now (I don't know if that terminology is international, it means he can liquids through a tube directly into his stomach) so I can give him his medicine that way too. That surgery has made a massive difference to all of our lives.
Respite is so important... Do you and your wife have anyone who can let you both take a break together? My experience is that it's very easy to get completely burnt out, and not even notice that it's happening because you're so busy with the daily routine. That's where games, tv, podcasts, etc., come in for me, they're a great way to take a step back from things.
Would you have a good idea about what to expect from the future? That's a big issue for us too. We could do with knowing more about where our expectations should be. We were told to prepare for the worst from the very beginning, and when we brought our son home first it was with the understanding that he wouldn't be with us for very long - possibly 15 months max. Obviously he's doing a lot better than was anticipated, so it'd be helpful to know exactly how optimistic we should allow ourselves to get.
Asterith said, "Just an FYI, Stevintendo is not crazy."
Switch: 7344-0096-1719
PSN: Stevintendo
XBOX: Stevintendo
Yeah, PEG is what it's called here too.
The main break we get is when our son is sleeping or in school. He does go to school 35 hours a week, so that's a good bit of time. Of course I'm at work then, so... Sleep has suffered like with many parents of young kids, since we tend to stay up late to get some personal time (games usually for me; wife does various things).
Our situation has been quite different from yours, with your devastating initial prognosis. We basically thought things were progressing normally until a little after a year old. Then, he was only a little behind and there was hope that with intensive therapy he would develop faster and possibly even catch up with his peers. The first couple of years after his initial diagnosis were very stressful as I would pore over his daily progress reports hoping for some sign of, well, progress. Unfortunately, he's really not very far from where he was 6 years ago though. We've stopped stressing out about day to day results. I can't really imagine a future where he'd be able to live independently. Although he can help to some extent, he still needs 1:1 assistance for bathing, feeding, dressing and using the restroom. Still in diapers after a few aborted attempts at potty training.
It is probably long past time for us to start coming up with some kind of financial plan, since our son will very likely outlive us. I expect he will be placed in some kind of group home when we die or are too old and feeble to care for him. Thinking about it is quite depressing, so we have put off looking into details.
I'd guess in your case, it's really probably way too early to start making any long term plans or even predictions. I suspect the next few years will give you a better idea about the likely trajectory for your son, right?
I guess... I could sort of fit in here... in a limited capacity... ?
Just going to spoiler this big wall of text. I tend to ramble and type too much when I explain things.
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I've decided to put this in spoilers too because I've ended up writing a lot more than I'd planned to!
Asterith said, "Just an FYI, Stevintendo is not crazy."
Switch: 7344-0096-1719
PSN: Stevintendo
XBOX: Stevintendo
Not so much at the moment completely out, as they just pulled her ship back to the shipyard. The problem I'm up against now is that it's the Chief season, and she's a chief, which basically means I'll barely see her for the next 7 or so weeks. When sailors pick up chief (E-7) there's an initiation progress that's a bit of a tradition in the Navy. So she's working 60 hour weeks scheduled, and working on getting the new chiefs selected this year through the initiation process, so basically if I see her she's working, even at home. There is no downtime, even as I'm typing this she's out in the parking lot talking to one of her selects that swung by for one reason or another, and she's been home for over an hour... it just never ends.
On the one hand, I'm almost a hermit so the isolation probably doesn't get to me as much as it would affect other people. On the other... I have almost no adult interactions outside of this forum and Reddit at this point. I know this is getting to me, but I don't really have any outlet when I'm responsible for these two 24/7. I joined a pen&paper group here that starts tomorrow, and I'm really nervous that the whole time I'm going to be disrupting the group by having to get up and deal with them while muting my mic. But I figured I'd give it a shot, and hope for the best. I'm going to order Domino's pizza, set up the TV and a tablet, then I might hide upstairs with my wife's laptop in hopes that my kids don't kill each other with me out of the room for a few hours. I mean... if one killed the other, I'd only have one kid to take care of, but the problem is it'd be the stronger of the two... (sorry, I cope with dark humor).
I've actually done Lyft off and on for a while, it's not horrible. The pay could be better, but it's hard to beat the flexibility (just log off whenever I feel like I'm done, no one to answer to). And it's really not pushing myself much. I used to be a network tech for Comcast, and it wasn't unheard of for me to work 120+ hour weeks while on-call... I also used to work nights as an ER clerk years back, and I actually sleep better during the day and feel better at night. The only issue I've had is that I'm acclimating myself back into that kind of schedule now, so at the moment I'm pushing myself by staying up until 1-2AM, then taking care of the boys all day. They get up around 6-8AM, they're both early birds from having spent so many years already getting up at 5AM to get ready for daycare. But ultimately, I'm using my wife's car, so I could only drive during the time that they're in bed (8ish PM) to about 2-3AM when she starts getting ready for work. That puts me driving for 6-7 hours per night, and for sleep I'd have from about 9:15AM to 4PM, which is just shy of 7 hours. Shouldn't be too bad.
As for Maryland, we own a townhome up there that we'll probably move back into. Her second duty station was up there and we were there for 10 years. That's where I was a network tech, so I'm hoping to slide right back into it. She's going into a more routine, 40 hours per week with stable hours position, so our family dynamic will shift to her being more of a carer than me when we go up (hopefully). That's how it was before we moved down here to Norfolk, which is what allowed me to work those crazy weeks during storms. I have a voucher for the Security+ test that I just need to study for, so I may try something more IT focused before just going back to Comcast, but I've already reached out to some of the management there to try to get my foot back in the door... our finances are royally FUBAR'd right now, so we can't afford for me to stay out of work much longer.
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Ah, we went through this too and it's painful to think about even now. When my son was two, he was developing some very rudimentary pre-language abilities. There were a couple of songs we sang to him and a small bit of classical music one of his toys played that he'd try to imitate. It was very cute. For a brief time he would verbally request a bath: "bah". Then later he would say "go" (more like "geh") when he wanted us to push him on the swing. He'd sign for "more" when he wanted more food. If you told him to "give" you the object he was holding, he'd hand it out to you. Just a bunch of things like that. We assumed these would be stepping stones to more advanced skills. Instead, they would typically fade a couple of weeks after he learned them, never to be seen again. After a year or so of this, he seemed to stop learning new skills altogether.
We did wonder if he was having some kind of nighttime epilepsy without evident seizure episodes but the EEG wasn't too revealing and we even briefly had him on anticonvulsants out of desperation, but no results.
Yeah, very painful to think about. Gonna go play some games before I start crying!
Well, first up, there's no need to apologise for the dark humour; I understand completely, and you made me laugh! There have been so many times when I've relied on (quite often dark) humour to deal with difficult situations. I think the phrase "if I didn't laugh, I'd cry" is very fitting in a lot of cases! I understand that a lot of people wouldn't get that though.
How did the pen&paper group go? Is it a group that'd be sympathetic to your situation? I could probably be described as a bit of a hermit myself too... I have to make a significant conscious effort to initiate contact with friends, and I'm never the one to suggest meeting up or anything like that. I went out for a couple of drinks with a good friend of mine in Sept. 2017 and I'm not sure if I've done anything like that since then... I think it's fair to say that it'd be better for me if I was more social but most of the time I just don't have the energy for it, never mind the time.
Well it sounds like the move will bring with it some positive changes. It seems like your current setup puts a huge amount of pressure on both of you and there's only so long you can put up with that. It must put a strain on your relationship with each other at times as well. Are your boys familiar with the place you're moving into?
That is really tough. It's so difficult to deal with that. I guess in this thread you can say as much or as little as you want. I've actually been shocked at how much my posts here have taken out of me. I think it's good for me to share here but I really didn't anticipate how much energy it would take from me to talk about these things... Games are great though, aren't they?
I brought my son to an appointment on Monday that we'd been expecting for probably a couple of years. I'm wondering if my experience is the same in other countries, it's one I'm very familiar with... The appointment was early afternoon, so the whole day was about getting ready to go to the appointment, and scheduling feeds, naps, etc. in such a way that he'd be at this best for it. Then we arrive to the appointment and the waiting room is packed full of people. The appointment time comes and goes and there's no sign of my son, or anyone else, being called to see the Prof. About an hour after my son's appointment time I find out why we haven't been called...the Prof. is only walking into the building at that stage. (And I'm sure I don't need to tell anyone in this thread how stressful it is to sit with your child with nothing to do except hope that they keep it together until you get home.) Anyway... Thankfully we were somehow second in the queue, and there were two rooms being used so we got out of the waiting room straight away. My son didn't like that new room though because the blinds sounded strange when they moved in the wind, but he didn't get properly upset by them or anything, and his usual Physio came in and chatted to us while we waited, so that helped. Eventually the Prof. came in and the appointment lasted a whole five minutes before he left... It's a system that seems like such a waste of time and also one that has no regard for the people who are coming to the appointments. At least in this case I learned something new and interesting during those five minutes... I've had a few appointments like that where I've only been told things I've heard a million times before, those are much more frustrating...
Asterith said, "Just an FYI, Stevintendo is not crazy."
Switch: 7344-0096-1719
PSN: Stevintendo
XBOX: Stevintendo
We waited several hours for the geneticist. Maybe 3 hours? Luckily this is when my son was really young and manageable. Also we were in an exam room at least. Nowadays though, with how big and agitated and disruptive he gets, we’d probably have had to leave.
Genetic testing didn’t reveal anything by the way.
How's everyone doing these days?
I haven't written anything here in a while because there's just been so much going on with us... Since the last time I posted:
So things have been very busy. It sounds grim but there are good things too. The Psych report should help with accessing services in the future. And once he gets used to the school he should get a lot out of it. It's gorgeous, loads of specialised equipment, great teacher-child ratio, lovely gardens, and there's even a little petting zoo. Really nice place.
Asterith said, "Just an FYI, Stevintendo is not crazy."
Switch: 7344-0096-1719
PSN: Stevintendo
XBOX: Stevintendo
I'm trying to get Tristan (6, autistic) on ADHD meds, since it has helped so much with my Sabastian (8). I tried going through his PCM but she didn't feel comfortable starting meds without a formal diagnosis (or at least a psychological screening). I called around back in May when I lost my job, since I figured I had plenty of time to take care of that stuff now.
We finally had the initial appointment last week. Waiting 5 months for an appointment sucks, but it was the only place in the area willing to do a screening on a 6 year old. I'm not mad about it, they were the ones that screened my oldest, and they've always been nice and patient. My wife got off for the appointment, and we sat down as a family to do the initial interview.
The psychologist brought out some toys for my boys to play with, and they played with his intern while we answered questions. At one time I mentioned that his PCM needed the screening before starting medication, and the guy looked at us and said, "You're telling me they needed a screening with the way he's acting?" It was pretty funny, he had been displaying a lot of classic ADHD symptoms the whole time: impulsive, unable to regulate his volume, lined up the toys, bounced from one thing to another, etc.
The next appointment was supposed to be next Monday but got pushed back to 8Oct. Then it'll be a few weeks until we get the results. Beyond that, Tristan's behavior has gotten so bad on the bus he got kicked off. He had transportation as part of his IEP a couple years back but it got dropped while he was in daycare (they provided transportation). Now I'm waiting for them to get it back on there, get handicapped transportation set up, and until that gets worked out I'm taking them to school and picking them up in the afternoon. He's nearly uncontrollable, and being solid muscle and about as big as a 10 year old doesn't help things. I can somewhat direct him, but every day is pretty much a fight from start to finish. I was always against just throwing medications at a problem, but at this point I'm counting down the days until we can start because I just need some help with him.
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Today was a very good day. Not just because my son successfully made it through pretty much a full week in his new preschool (two days, three hours each) without much difficulty, but also because he got to try out Equine-Assisted Therapy for the first time. The place where he's just started has an Occupational Therapist who specialises in Equine Therapy, and we made a point of signing him up for it as quickly as possible.
The therapy basically involves him being enabled to ride a horse in different positions for a short period of time. There are a range of reported benefits for a child like my son, including the fact that riding a horse more closely mirrors the effect that walking/running has on a healthy body than any other activity he engages in. We were very worried though that he might get spooked by the horse (he's never seen one up close before), strange environment, and team of strangers. Plus he's still new to the school in general.
I was so happy to see that he took to it like a duck to water. He was in his element once the horse got going. The team said that sometimes it takes children multiple sessions with the horse before they even get up on it. My son was so comfortable though that he pretty much ended up doing the same routine as the child before him, who'd been doing it for a couple of years. He was laughing and smiling for a lot of the session too.
Needless to say, I was an incredible proud parent today and honestly had tears in my eyes watching him excel at a brand new activity. Can't wait for next Thursday when he gets to do it again.
I hope it doesn't take too long to get everything in place. What you're describing sound very challenging. There can be so many hidden difficulties in areas that other people just take for granted, like just getting from A to B... I'm fine if it's just my eldest and I, but if I'm also going somewhere with either, or both, of the other two children then things get very complicated. I'm hoping to get some kind of practical solution set up for my son once he's settled in a bit more. It's fine at the moment, but I can see getting him to school becoming very complicated eventually.
Asterith said, "Just an FYI, Stevintendo is not crazy."
Switch: 7344-0096-1719
PSN: Stevintendo
XBOX: Stevintendo
This was another big week for my family. As of Monday, I am officially on leave from paid employment. I'd usually be run off my feet this week getting all my modules set up and delivering introductory lectures, but not this year. I have no doubt in my mind that taking leave from work is the right call, it just feels a bit weird this week. There's no way I would have had time to prepare for a new academic year anyway.
On a related note, my son's sleep has been so bad recently. We don't know what's going on... I'm usually getting about two hour's sleep at a time, which works out at four to five hours of very broken sleep a night... It's been like that for a long time now, I'm absolutely wrecked and finding it increasingly difficult to think straight when I'm up at 2 am... Hopefully whatever's going on will sort itself out soon.
Asterith said, "Just an FYI, Stevintendo is not crazy."
Switch: 7344-0096-1719
PSN: Stevintendo
XBOX: Stevintendo
What do you do when your son is up? I mean, do you have to watch him or monitor him in some way? Or can you just leave him alone and try to go back to sleep?
I think the lack of sleep is unsustainable over the long term.
Unfortunately, if he's up then I'm up too. He gets very upset when he wakes and even at the best if times he needs me to hold him and help him get back to sleep. That could mean 30 mins of sitting and holding him as still as possible, or - as has been the case for most nights recently - it could mean hours of holding him.
I tend to use Bluetooth headphones to watch Netflix on the TV to help get me through the nights, but it's tough. Sleep has been a problem since he was a few months old and was put on steroids. He does have good phases and bad phases...but I can count on one hand the number of age-appropriate nights' sleep he's gotten in the last three years. The last time was May 2017...
Asterith said, "Just an FYI, Stevintendo is not crazy."
Switch: 7344-0096-1719
PSN: Stevintendo
XBOX: Stevintendo