I feel like one of the best things about being a disabled parent is not worrying about whether my child is "normal" or not. I have a parenting app I use that has a community function, and so many of those parents obsess over whether or not so many random quirks are "normal". Meanwhile, I was told my child failed the initial hearing screening in one ear, and I was totally fine with that. I was like "well, if she's deaf in one ear, we can deal with that, no biggie". Turns out it was just leftover amniotic fluid gumming up the works and she's got typical hearing, but that month we were waiting for follow-up testing would have been way more stressful if I saw my baby having partial deafness as a bad thing. Since I'm disabled myself, the thought of my child being disabled is a lot less scary for me. In fact, I'm a little afraid I won't know what to do with a "normal" kid!
Wow, I was worried there was something wrong with me for worrying that my future, potential kid might turn out abled! I'm glad to know other disabled people see it like I do!
As a wheelchair-using woman (who doesn't want kids) with a wheelchair-using sibling people would always think I was weird for not wanting kids because of the high chance of them, ya know, walking after a while. Seems too wild. Disability is a definite perspective changer.
@@StayGreenBDifferent I once made the mistake of confiding this feeling to an abled friend, who looked at me like I was a monster and said "How could you possibly wish DISABILITY on your own child?" Like it's some horrible living hell. I feel like it's just my way of being human. I don't feel like my existence is incorrect.
As an autistic person, one of my biggest worries, if I ever choose to have kids, is that they would be neurotypical and I wouldn’t be able to communicate with them.
As someone who is childfree, if my friends called me and said “we’ve both hurt our backs and can’t take care of the baby, help?”… yeah, okay, I’ll help. You’re gonna have to tell me what to do, but I can be your hands.
My auntie (ten years older than me) recently had her second child. She fell asleep at my house and my mum was away (I'm a minor) and the baby started crying. I didn't know what to do and she is so small and I'm generally scared to pick her up because I might break her or drop her. I eventually picked her up and sat back down. My dog came waltzing over and my auntie doesn't want him near her (My dog loves babies) so I ended up having to fight off a very adgitated toy poodle whilst trying to figure out what the baby wanted. My auntie eventually woke up and gave me a vocal essay of what I had to do as she was hungry. It did not go well but I tried 🤷♂️.
Same! I dont plan on having children, but when my friends have ive already told them im here to help! Two of my moms close friends were a great source of confort during my childhood and i hope i can be like them in the future :)
@@tomnyskull I love this so much. Being a parent can be so isolating, and I really appreciate hearing that childless people *want* parent friends. And are interested in other people's kids
@@LaDaDaDeDaDaDa.. your aunt gave you an essay on what to do when HER kid cries and she sleeps through and leaves them with a minor..... you were trying to help. She sounds like an absolute toolbag.
The swivel car seat is such a great example of "products designed for disability that are inadvertently just good for everyone" like how texting was designed for the hearing impaired but think how much anxiety it saves the whole world.
Texting was actually originally for developers to send logs, but then they thought that it might be useful to allow the actual users of phones to send messages too. Universal design is great though.
Also accessible curbs, which are great for the elderly and anyone pushing anything in general! Making the world more accessible helps everyone, and not only because it empowers disabled folks to let their light shine brighter in the world. Think of Stephen Hawking for example. That should absolutely not be the main reason to care of course, but everyone really does benefit. I hope more people can understand that so we can do away with ableism.
I had mono with fatigue as my main symptom a few years ago and it blew my mind how much society downplays having CHRONIC fatigue after experiencing fatigue as a symptom for a few months- I don’t think people appreciate how debilitating fatigue is as a symptom
Chronic fatigue is just so hard to navigate around and really convey to others. When I tell people I'm aboslutely exhausted after working a 9 to 5 and they're like yeah me too! It's always like oh 100%! I will never downplay other ppls' personal fatigue. But.. it's hard to voice just HOW tired and absolutely drained you are. Pushing yourself past your limits daily is miserable. I often word it to able-bodied people in my life like this: Imagine running a marathon. Now imagine going through daily life without resting from that, but Every. Day. I feel you. 😔
@@meltedmarshmellowpeep I describe the pain from my fibromyalgia like this: you know when you get the flu and you hurt so much that you don't want to open your eyes, because your eyelids hurt? That's what fibromyalgia pain is like, and it's everywhere, too, just like with the flu. Maybe ME/CFS is similar?
@Awkwardly Rachel I mean.. I have both Fibro and ME/CFS so I really can't answer you there, haha. It's hard to pinpoint what is causing what sometimes. I get how you feel though! Its definitely that, and for me it's more of a deep ache all over (and specifically in my joints, possibly because of my EDS).
I have suffered with ME/CFS for years. People don’t get it, because you look like nothing is wrong. I have to pace myself, I cancel plans last minute, been told that it’s depression, you name it. The flare ups can be severe and you are in the bed for days and walking up a flight of stairs may as well be Mount Everest. When you have good days you practically overdo it bc it doesn’t last. It’s very challenging to say the least.
I was coming to terms with not having kids when I met my other half and his 3, around the time I got my first wheelchair. It definitely felt like being thrown in at the deep end, but one of the things I'd never have realised otherwise is what an absolute balm they can be when you're wallowing in your disability and they come in, fully giving no shits about it because that's how mummy's always been, wanting to spend time with you because they love you. It's honestly an indescribable feeling and it really puts the disability demons in their place.
This is how I feel about my nieces and nephews! They didn’t know be before, and so the way I am now is normal to them! They help me do things and adapt their games and plans so easily without batting an eye. When I visit they will hang out with me in my room and snuggle up. I don’t have to try to sit up like a “normal” person. They will even hold the screen so we can watch something together. It’s so nice to be included and not judged and to not have my inability to do certain things be the elephant in the room.
"You'd be shocked at the things I've done with a horrendous migraine"... oh yes! When people talk about headache vs migraine I often hear people say "if it was a migraine then you wouldn't be able to use a computer, get groceries, etc etc!", but when migraines become daily/weekly you can't avoid all tasks for the rest of your life! I used to work with full on migraine auras - the display cabinets would actually set off the auras, but the manager didn't think it of importance 🤦♀😱
The one time medical staff took my pain seriously was when I had "left over" painkillers after my appendectomy since it didn't feel worse than regular headaches, even if it was enough worse than a period to make my aunt diagnose me.
until I got a proper diagnosis I had pretty constant migraines for twenty years. Actually most of the time I got on with my life. Now they're less frequent I can't function with them like I used to and I have no idea how I did it.
My mom is disabled (paraplegic - T12 complete SCI), from a car accident in her early 20s, before she had children. It's truly incredible how far assistive tech has come since she was rearing two young children in the 1980s. She's now a grandmother, 40+ years in a wheelchair. It hurts me personally when people are discouraging to people with disabilities becoming parents, because you don't need to be able-bodied to love and nurture a child. I'm thankful for you all sharing your experiences. 🥰
I’m with you. I don’t know why people think that way. I am 51. My Mom had me right after she was diagnosed with MS, by the time I was 5 she was using a wheelchair and she raised my brother and I just fine.
"You just do it." Exactly. As a single mom with fibromyalgia and having a child with profound autism has been interesting. People always ask me how I do it. I'm like "I have no choice? I just do it."
My mom is hard of hearing and that honestly wasn't nearly as big of a deal to our family as some people might think. I genuinely often forget that this is a thing about my mom because I'm just used to it and it's our normal. She has never been any different for us kids. Other people though have reacted sometimes very offensively and that's with my mom not using hearing aids or otherwise being visibly disabled. She speaks and doesn't know German sign language, I actually know a fair bit more than her just because I thought it would be good to at least know the basics. Did have to pretend to be my mom a lot as a child though and definitely always had to have my keys on me because she wasn't able to hear the doorbell ever. Lots of small things but you are just used to thst if you grow up like this.
@@theforestsongz Awh, for both of you that's genuinenly great to hear! I'm not hard of hearing, but ofc disabled and one day I want to have kids so just reading those alieviated a lot of my fears. :-)
Lack of community in those 1st years, not knowing I had hEDS and being unmedicated, undiagnosed autistic, and POTS - was so isolating. I'm still healing from it. It got a lot better! But whew, it was hard. I'm hearing, but learned asl(as best I could with no one around me to practice with) and I didn't understated that baby sign was even a different thing, so I taught my kid asl. It was super useful bc she didn't talk until she was pretty old, bc she's also autistic, and she had the option to speak w/ her hands. She had 100 signs by 2 years old. It was so great.
Oh hey another autistic person with a connective tissue disorder. I'm starting to think there might be a trend. My girlfriend randy has Marfan's, my girlfriend saina has EDS and I have severe joint hypermobility. And we all are autistic. all of us have chronic full and partial dislocations and subluxations (where the joints pop out but then snap back in place) we've gotten really good at putting each other's joints back in place.
@@michellethiesen7972 researchers, doctors and the patient community have definitely noted the connection! To the point where if you have one, you should check for the other. Unfortunately, as usual, the doctors are far behind the patients and researchers on this topic. So we're the ones leading the focus.
I loved this! I am a wheelchair user and have osteogenesis imperfecta. I am getting married in October! My partner and I are obviously super excited, and having all the fun imaging the future kind of conversations. But having kids is one conversation I've had a hard time with. I have always known I wanted to be a mom one day, but have struggle with knowing what that looks like. This was super encouraging to watch!
I’ve had chronic migraines for years now, but have only been diagnosed this last year (I also have other disabilities but I’ll focus on those)… and something I’ve noticed from able bodied people is that they tend to think in extremes. In the sense they either think “migraines are just a headache, you can still do the same things that I can!!” Or they think “oh that must be terrible, let me do everything for you!!” They also seem to think we don’t know how our disabilities affect us… that’s just my experience though.
Yes, it is a common attitude that somehow a disability affects your intelligence, even if that disability is entirely physical. It's one of the worst things about so called 'normal' people.
And it's so annoying. Especially when other people with migraine judge you too. Cause either it's "It's not a real migraine if you can get out of bed" or "I can work through my migraine, why can't you?". Like we get enough crap from able bodied people, can we skip the infighting please?
Ive been diagnosed with chronic migrane for like, a year and a bit? Had it for two years though ive had times where im doing online school with audio from my phone in the dark bc every stimuli is actually unbearable. To going on holiday with not really any symptoms, to having to work through a lot of assignments with a migrane lol. It comes and goes tbh
Absolutely. I have an intellectual disorder (nonverbal learning disorder), as well as a few hiccups in my physical body. Abled people can absolutely drive me nuts. It's either "learning disorders are classroom exclusive, stop complaining" or "you are a drooling pile of empty-skulled misery, I need to save you from your inabilities". It's rare when it's in between. My disorder is disabling. Before it was treated and managed, I was nonfunctional. My learning disorder guts the toolkit of functional in-built skills people are typically born with, and basically leaves you with a spoon and a wrench and a note that says "good luck!" It affects every part of my day, every day. Before treatment, I could barely form coherent trains of thought, couldn't keep focus long enough to complete a task, couldn't remember things well enough for my memory to be of any use, and so on. Now, I'm functional. My disorder is still disabling. I have a hard limit of stamina. If I go past it--if I push myself too hard--my brain will break, and I will develop limitations nearly identical to dyslexia, dyscalculia, and (on really bad days) dysgraphia. My brain will not be able to string together thoughts well enough for me to speak or understand language, so I go fully nonverbal and my audio processing shuts down almost completely. (The sound the parents make in Charlie Brown is about what I hear.) But, while my disorder is disabling, I'm also perfectly capable of taking care of myself and my needs and I live an almost entirely normal life. I don't need to be coddled or pity, but I also don't need to be dismissed or invalidated.
Lol! Loved the typical parent error on not quite being sure of the age of your child. I have said my daughter is anywhere from 9 to 30 years old depending on where my head is. (She’s 27)
As a non disabled person I love watching your videos Jessica! I love learning more about how disabled people cope with a world that doesn't accommodate to them. It has helped me become more compassionate about those with disabilities and I have made a few disabled friends at school now! Thank you for educating me and so many others! (ps Rupert is so adorable you are an amazing mum)
Just wanted to say, this makes me happy to read as a disabled person! It should def be the norm, but it reminds me of when my girlfriend went out of her way to read up a bunch on my conditions to better understand what I go through. I'm sure your friends appreciate it a lot! 💛
When we have kids, my partner and me have both decided to teach them BSL. He struggles to learn it because of his neurodiversity but mine makes me incredibly good at remembering and learning (we’re a good balance for each other). Because of my own disabilities and from working with a lot of disabled children as part of my job, if we have a disabled child, it really won’t be a big deal for me, it’s just a part of who the child is and we’ll just have to find the right things that work for them.
It was such an interesting video! I'm disabled, but don't have children, and you opened my eyes to few things. Firstly, I don't have to be on 100% strength all the time. It's okay to rest. Secondly, now I know how people manage to use buggies while using wheelchair. It was fascinating to hear about the inventions that are helping disabled people. And the part about 'what is the worst thing' and the concept that it's not always the thing that people think is worst, but something that bothers YOU the most is really important thing. For me there is back pain and migraine. Not the constant mood swings of bipolar disorder. But there was a lot of people thinking that I'm used to pain. Just because I experience it for the most part of my 27 years of life doesn't mean that I'm used to it, Glenda.
I grew up being the oldest AFAB person in a family of 7 kids. The amount of responsibility that was foisted on to me was enormous! But as a result I am a child free person who could take care of a child at just about every age.
I hope you still had the ability to be a kid despite that! I'm sure it was challenging, a lot of the caretaker leaning people in my life often neglect themselves, so just checking in. :-)
@@AdorableAcushla Jeez... I'm sorry, that's not something that should ever be put on a kid. Like the other commenter said, I hope you allow yourself the ability to enjoy things you maybe couldn't before. Sounds like an overall unhealthy situation, but I hope distance and time have been kind to you.
I love both your perspectives here! One thing I want to say, as someone who grew up with a disabled parent, is that your kids will also learn so much by watching your abled partners be there for you. They’ll learn about unconditional love and support and they’ll have an incredibly high standard for relationships because of what they see in their own family.
Thank you for giving me the tools to advocate for myself. I changed my dr as my previous one would tell me cfs is in my mind. Im now going to see a rheumatologist hopefully for diagnosis finally. Before watching i was always down and didnt know what to do about it. Now i want my life back xx
I can't load all the comments so I don't know if someone has already said this but I felt I should say that the Smart Drive isn't the only power assist option and it's really not the best one for people with EDS. It's possibly the cheapest so a lot of people go for it but it needs you to be able to steer or stop the wheelchair under your own steam and that can often cause hand/finger/wrist/shoulder dislocations. They have also had a lot of issues with it not always connecting well with the watch. I have heard the new version is more reliable but there are safer options if you have joint or strength problems. If you can have your arms out in front of you then Firefly type add ons are good, they turn your chair into a mini scooter/trike type thing. They are great for more off road options because they lift the casters slightly and add a bigger front wheel. They do involve you being able to hold the handlebars though. Powered wheels are great if your car can deal with the weight and you can take them on & off. They give you the most control and you can have ones you control by pushing the wheels and ones you control with a joystick. They can always be swapped out for normal wheels again. They are heavy though. I have a light drive and it goes on the back of my chair and pushes the chair by attaching to the wheels. It needs really high pressure wheels to work and I have to pump the wheels up regularly. It also means I can't adjust the back of my wheelchair for more support because it changes the width of the back of my chair and then the drive doesn't clip on. It also takes up the whole of the back & underside of my chair so I have no room for a bag. It has been useful but it wasn't the one I picked and I can't fully recommend it. The starting and stopping is not smooth and has made my neck spasms worse. Anyway the smart drive isn't the only option out there and isn't the best for people with strength or joint issues. Check out reviews by people with EDS if you are looking in to it. For a lot of people it's the only one people know or the one insurance will cover because of the cost but be aware of the issues.
I absolutely love them - I'm from the South of England and started using my wheelchair a couple of years ago and they were one of the group the made me realise that wheelchairs gave you your life back, rather then limited it.
You both look stunning omg 😭! Great outfit moment! And as long as love is involved in the parenting it’s gonna work out just fine 😌. All my friends with parents with disabilities turned out fine and have really strong bonds with lots of love and respect.
As someone with ME/CFS and a wheelchair user, the buggy issues are real. But fortunatly I could use ours as a walker since it was so big and sturdy. My husband is a giant and since he'd be the primary (able bodied) parent, the pram needed to be adjustet to him. I tried baby sign to teach my son signlanguage and encourage him to communicate. But by that time my husband had signout from the relationship and parenting. He refused to do anything that could have improved life for me if it didn't include any improvements to him. So "waving your hands around" was apparently stupid. Turnd out our son is autistic and didn't start to talk untill 3,5 years old. Sign language would have been perfect and made both of our lifes much easier. I think the biggest issue for me is that I can't play with my son. No going to the park, no playing with toys in his room. Not even reading to him. I just don't have the energy. Being chronically exhausted to the point where you don't have the energy to even lift your arms or half time get out of bed makes parenting difficult. So anyways, I did gt out of bed, made sure he had all the things he needed (food, clothes, took him to daycare and doctors and so on). I have basically been a single parent for the past 5 years. Our son is 7 now and I'm the only one who makes sure his speech therapy is on point, he has clean clothes and healthy foods to eat. I'm completly alone since I have neither family or friends, nor the energy to find a support group. Only other ME parents understand what it's like, and they hardly have the energy to be online either. The ASD/ADHD communities are wonderful but lack the understanding of how life with ME actually is. Everyone I know calls me lazy because I spend all day in bed, just so that I can have the energy to spend the evening with my son. and since I can't work I have no income, so even if there are many usefull gadgets out there. I wouldn't be able to afford them anyways. THe perk is that the older my son gets , the more help I get from him. He has been doing his own laudry since he was 5 (on his own will, he finds it fun so I'm not going to stop him). He'll grow up to be a good ally to everyone.
Your story is very similar to mine I'm glad I read this not for what your going through but to know I'm not alone. You are an amazing parent if you do all that an still really struggle with your illness like me. Ur son will be so proud of his parent when he understands more. My son is 8 also I have m.e and fibro and other conditions. Only us parents with chronic illnesses know how it is. Ignore other people I've also had the same abuse from nasty people they dont understand. You are not nor ever will be lazy your far from it as you know. People say nasty shit to make themselves feel better about themselves which is messed up. I don't have to prove anything to anyone and never will.
I have EDS, am floppy too, and lack balance. What bothers me the most is the chronic fatigue and the body aches from any exertion (including sitting, if my back isn’t 100% supported and relaxed). Secondly it’s the dizziness from the POTS (I also get it from sitting too long with my legs down, as people normally do), and strangely the chronic sinus, and lack of air filling my lungs and oxygen getting in my brain (the breathing muscles, for example the intercostals, are under developed, and lazy to expand properly). Third stomach pain/heartburn etc… It’s all connected to EDS, according to my doctor. But nobody would guess any of this, just by looking at me! :P They only may think I walk a bit differently, from being too flexible and unbalanced, for example…
I have to admit, watching the way you lovely ladies parent your amazing children hurts. With my first I was so close for the first six months, and then I had to go back to work. With my second I was only home for two weeks. The person who they were left home with was terribly inattentive to both children, and mistreated them. They are amazing kids, and I love them both dearly, but there are so many things that you are giving your kids a great foundation for that mine missed and it is causing us struggles to this day. I love watching you parent, but it hurts because I wish I was able to give my kids what you are giving yours. Bravo!
I love you both individually so together is like the cherry on top! I always thought growing up I’d like to be a mum. Recently I’ve sort of been thinking that for medical and personal reasons I probably won’t have my own kids, but I do get to be the greatest Aunty I can be to my best friends kids and my nephews. I’m great for days out for the carer tickets or discounts
Watching this recovering from gallbladder surgery. Thankfully I have lots of help from my husband and sons (youngest is almost 15). But I’m still “parenting” getting our youngest ready to start high school.
Wow, I didn't know these baby carriers and options existed. Thank you so much! That might come in very handy when babysitting my grand kids if my fibro worsens. I think it's a very good idea that you taught him BSL! And I think if your kid is the shy type, it might also help him feel freer to express himself in a social context if he feels what he says to you remains shrouded from the understanding of others, it's less embarrassing for him to ask questions and all... Kids are very loving and understanding. My son was very helpful in helping me get out of bed some mornings my limbs refused to cooperate and now that he's an adult, he will run errands for me on days I would want to do them myself but am trapped in my body. I'm very thankful for him.
I don't have children yet but I get what what you mean by just adapting/doing what you need to do in whatever way you can. When I'm brain foggy/fatigued/can barely breathe, if I am needed, I am needed and I do what I need to do. It doesn't really help with my loved ones not getting that I actually have a chronic condition, though
My daughter just turned 19 on the 10th. She and her brother went through me having a chair or crutches or rollenator etcetera. So glad to see this. I just had newsgroups!!
Being deaf and wearing hearing aids is no big deal to me...it's my normal since I was a little kid. 😊I don't feel any different than other people although I know what you mean about "ableism" that I sometimes get from non-deaf/non-disabled people. I really enjoyed both of you in this video! Thank you both for a great video! ❤
I’m so glad you all mentioned how expensive it is to accommodate ourselves. I will admit to having a lot of uncertainty about how to parent with my disabilities. It was nice to hear specifically about how disability has aided in parenting. This was such an amazing video.
I just want both of you to know, that you influenced me by giving me the confidence to become a mother. When I became a wheelchair user, I didn't think motherhood would be in the cards for me anymore. Now, my son is almost 5 months old, and boy does he love riding in my wheelchair. 🥲 Thank you ladies.
This comment is just so wonderful... 🥺It gives me hope that one day I can be the parent I want to be while still being disabled. Your son sounds so adorable, and I wish both of you the best!
@@meltedmarshmellowpeep You can totally make it work! It just takes some adjustments, but as disabled people, we are used to that! Thank you so much for your well wishes. I wish you all the best as well. 🥰
I'm autistic (with a couple more disabling mental illnesses) in my mid 20s and I reaaaally want kids before 35. For personal reasons, but also because both me and my partner are trans so the probability of a successful assisted conception goes way down after a certain age. Right now we live in a small studio, I can't work full time and we're just learning how to handle a household on our own and just... Being independent and not live like students. And I must say the thought of having kids in a few years is a huge motivator in learning how to live and function with both of our brains and bodies. We agreed we won't have kids until we can handle life without them. So we have just have to do it. So far respecting our limits and learning new systems and ways of doing things has proven the most critical.
I totally get just managing with severe migraines and chronic illness with a baby. I became a mum and then 17 months later a single mum, he's four and a half now and I have gotten through so many things that i never would have imagined I'd be able to deal with. I've had meningitis, many many flareups with pleuritis and costochondritis, bad asthma, and this year a 9 day stint in hospital that is still a mystery. My sister is child free by choice and I feel like women face a lot of stigma for not wanting kids, but just because someone doesn't personally want kids doesn't mean they aren't also an adoring, doting, wonderful auntie. And despite how hard it has been sometimes, I've smiled more in the past 4 years than the 27 years prior
Hi Jessica. I found it really interesting to find out how another Mum coped with motherhood while living with a disability. I was lucky I had a friend who was in the same boat as me sort of she has a 4 year old and a 5 year old as well where I only had the one. Her husband was very surportive of her when he was not working mine on the other hand was not.
I've decided after watching Jessica's videos that I will teach my children, whenever I will get blessed with having them, sign language by making it fun quality time spent together. I am not disabled, but I had interactions with hearing impaired or hard of hearing people. So yeah… 🙂
Chronic migraines run in my family, and personally the most I had to do while having a really bad one was sitting through a 2 hour class, but my mom, she raised me and my sister alone, so she could be having the worst migraine ever and still have to get up and take care of us. I honestly don't know how she did it.
another great thing about raising them as disabled parents is that if your child/ren turn out to be disabled themselves, its not new and weird. My kids haven't known me able-bodied, they understand I don't have energy and everything hurts and whatever, and now that my tween is being investigated for some very familiar symptoms, even if it doesn't turn out to be fibro, they know that someone gets them with pain and fatigue, they know that they are normal and not 'broken', and they have someone automatically believing them And it works the same for being neurodivergent and mentally ill - when anxiety and depression rear their heads, even in early childhood, we were there to understand and believe it. I'm there to understand the way that adhd/asd makes our brains sometimes. It's a built in (tiny) community
There are times my disabilities have made me a bit of a disaster as a parent, particularly when life changed and I had no carers. However, they're now 19, 16 and 13 - and they are truly lovely people, so I figure we can't have been that bad as parents. It's so nice to now have the evidence that we did OK.
Mine is almost 8 now, the baby years discussion really brought things back for me. I had a hugely frustrating time searching for equipment to help and was constantly told by Occupational Therapy that nothing existed!! (I discovered independently that that wasn't true, but it was still limited). Sadly my daughter hated baby wearing - wouldn't tolerate any baby slings - which as a wheelchair user was a bit difficult! But she adored sitting on my lap and still tries to lol
For some reason, I always thought DB was younger than my youngest, but actually they are both 13. I'm finding it a lovely age, sure there are teenage bits, but it comes with physical ability and competency too, I never asked her to do stuff like load my wheelchair in the car, but she's been watching and learning and jumped in the moment she could.
This was a great video and I appreciate everything both of you brought up everything honestly and openly. So glad you brought this on your content and appreciate everything now in the community and aware of what products can assist you at anytime. Thank you so much for sharing this great video and you’ve made me realise how lucky I am and appreciate all the effort you both bring the content you can
My husband and I tried to adopt through the foster care system in the US a couple years ago, and we were surprised that they declined both of us as ineligible due to my disability (muscular weakness) and his type 1 diabetes that is not fully under control due to being a little overweight and insulin therefore working inconsistently.
Can I please please have a list link of the equipment mentioned in this video? That pram that helps you on slopes sounds so handy! I'm a wheelchair user and want to have my own children one day but am honestly quite nervous about the up hill battle. Leaving me wondering can I do this at all?! This video really helped me on this journey thank you ❣️
i also have chronic pain and i suppress my pain so much to not be a burden. i’m too afraid to be honest abt my pain bc in the past i’ve been told i that it cant possibly be that bad but it just is. my parents also are always telling me that i need to help out around the house more but it’s physically so hard bc of fatigue and pain. like i try but it just doesn’t work out. sorry for dumping my crap here - i just needed somewhere to let it out
Yeah, I got swine flu in 2009. I got pneumonia so bad I coughed up blood for months and almost died. I had to drop out of university and it was terrible.
I’m an Early Childhood Educator (ECE) in Canada. I worked at a daycare where the kids helped me out what we in my j-tube. I’d have them all line up wanting to help. My mom owned the daycare we had 4 toddlers born between March and June so basically all the same age. They loved helping it was hilarious. I have other health issues and they learned early on that people are different and the parents loved it
Thank you SO much for making this video! Very timely for me. How do you manage with sound sensitivity, weakness, and increased symptoms with lack of sleep? Also, I am assuming the following may be common questions too - how would one manage financially for all those great products if they are disabled but not able to work or their govt doesn’t “recognize” their disability and therefore provides no support?
we need to set up a point in the area people can come in and out to drop of and pick things ao so that when they age out it can be pushed out to those who need it
Omg me and my friend got swine flu at Christmas in 2010 :( it really was dark. Sick on Christmas day... both of us were on the phone and crying about how bad we felt and she knew she was getting sick but still invited me out to cinema and a sleepover :| I never let her live it down
I don’t have kids yet but I have chronic pain and pots I use a cane when I have to( sometimes not cause people stare) my one fear is that I will get worst and have no choose but to have a wheelchair or roller. But I’m stubborn
I love you 2 so much, but as a man, in a wheelchair, with 1 good limb [right arm], who wants children...it seems like i'm going to have a wife who's incredibly understanding and willing to do most of the nitty gritty of raising our future children.
You'd be surprised - women often go for personality above all else, your future wife may well be absolutely fine with you and what you bring to the relationship.
Thank you for introducing me to other marvelous people on youtube! You would think that the algorithm would take care of that, but of course it doesn't...
I work in a childrens soft play area and didn’t know that baby sign was a thing, so when I saw a child signing back and forth with a parent I struck up a conversation about BSL and the mum awkwardly had to inform me that no in fact her child could not communicate with deaf people and this wasn’t useful once he could communicate verbally I genuinely don’t understand WHY baby sign exists when sign language is already a thing? Surely it would make more sense to take basic signs from sign language to use instead???
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I feel like one of the best things about being a disabled parent is not worrying about whether my child is "normal" or not. I have a parenting app I use that has a community function, and so many of those parents obsess over whether or not so many random quirks are "normal". Meanwhile, I was told my child failed the initial hearing screening in one ear, and I was totally fine with that. I was like "well, if she's deaf in one ear, we can deal with that, no biggie". Turns out it was just leftover amniotic fluid gumming up the works and she's got typical hearing, but that month we were waiting for follow-up testing would have been way more stressful if I saw my baby having partial deafness as a bad thing. Since I'm disabled myself, the thought of my child being disabled is a lot less scary for me. In fact, I'm a little afraid I won't know what to do with a "normal" kid!
Wow, I was worried there was something wrong with me for worrying that my future, potential kid might turn out abled! I'm glad to know other disabled people see it like I do!
As a wheelchair-using woman (who doesn't want kids) with a wheelchair-using sibling people would always think I was weird for not wanting kids because of the high chance of them, ya know, walking after a while. Seems too wild. Disability is a definite perspective changer.
@@StayGreenBDifferent I once made the mistake of confiding this feeling to an abled friend, who looked at me like I was a monster and said "How could you possibly wish DISABILITY on your own child?" Like it's some horrible living hell. I feel like it's just my way of being human. I don't feel like my existence is incorrect.
I think whoever came up with this quote said it best: Normal is just a setting on the dryer.
As an autistic person, one of my biggest worries, if I ever choose to have kids, is that they would be neurotypical and I wouldn’t be able to communicate with them.
As someone who is childfree, if my friends called me and said “we’ve both hurt our backs and can’t take care of the baby, help?”… yeah, okay, I’ll help. You’re gonna have to tell me what to do, but I can be your hands.
As a disabled mom, this is so sweet to hear. 🥺
My auntie (ten years older than me) recently had her second child. She fell asleep at my house and my mum was away (I'm a minor) and the baby started crying. I didn't know what to do and she is so small and I'm generally scared to pick her up because I might break her or drop her.
I eventually picked her up and sat back down. My dog came waltzing over and my auntie doesn't want him near her (My dog loves babies) so I ended up having to fight off a very adgitated toy poodle whilst trying to figure out what the baby wanted.
My auntie eventually woke up and gave me a vocal essay of what I had to do as she was hungry. It did not go well but I tried 🤷♂️.
Same! I dont plan on having children, but when my friends have ive already told them im here to help! Two of my moms close friends were a great source of confort during my childhood and i hope i can be like them in the future :)
@@tomnyskull I love this so much. Being a parent can be so isolating, and I really appreciate hearing that childless people *want* parent friends. And are interested in other people's kids
@@LaDaDaDeDaDaDa.. your aunt gave you an essay on what to do when HER kid cries and she sleeps through and leaves them with a minor..... you were trying to help. She sounds like an absolute toolbag.
The swivel car seat is such a great example of "products designed for disability that are inadvertently just good for everyone" like how texting was designed for the hearing impaired but think how much anxiety it saves the whole world.
Texting was actually originally for developers to send logs, but then they thought that it might be useful to allow the actual users of phones to send messages too.
Universal design is great though.
Also accessible curbs, which are great for the elderly and anyone pushing anything in general! Making the world more accessible helps everyone, and not only because it empowers disabled folks to let their light shine brighter in the world. Think of Stephen Hawking for example. That should absolutely not be the main reason to care of course, but everyone really does benefit. I hope more people can understand that so we can do away with ableism.
I had mono with fatigue as my main symptom a few years ago and it blew my mind how much society downplays having CHRONIC fatigue after experiencing fatigue as a symptom for a few months- I don’t think people appreciate how debilitating fatigue is as a symptom
Chronic fatigue is just so hard to navigate around and really convey to others. When I tell people I'm aboslutely exhausted after working a 9 to 5 and they're like yeah me too! It's always like oh 100%! I will never downplay other ppls' personal fatigue. But.. it's hard to voice just HOW tired and absolutely drained you are. Pushing yourself past your limits daily is miserable.
I often word it to able-bodied people in my life like this: Imagine running a marathon. Now imagine going through daily life without resting from that, but Every. Day. I feel you. 😔
@@meltedmarshmellowpeep I describe the pain from my fibromyalgia like this: you know when you get the flu and you hurt so much that you don't want to open your eyes, because your eyelids hurt? That's what fibromyalgia pain is like, and it's everywhere, too, just like with the flu. Maybe ME/CFS is similar?
@Awkwardly Rachel I mean.. I have both Fibro and ME/CFS so I really can't answer you there, haha. It's hard to pinpoint what is causing what sometimes.
I get how you feel though!
Its definitely that, and for me it's more of a deep ache all over (and specifically in my joints, possibly because of my EDS).
I have suffered with ME/CFS for years. People don’t get it, because you look like nothing is wrong. I have to pace myself, I cancel plans last minute, been told that it’s depression, you name it. The flare ups can be severe and you are in the bed for days and walking up a flight of stairs may as well be Mount Everest. When you have good days you practically overdo it bc it doesn’t last. It’s very challenging to say the least.
I was coming to terms with not having kids when I met my other half and his 3, around the time I got my first wheelchair. It definitely felt like being thrown in at the deep end, but one of the things I'd never have realised otherwise is what an absolute balm they can be when you're wallowing in your disability and they come in, fully giving no shits about it because that's how mummy's always been, wanting to spend time with you because they love you. It's honestly an indescribable feeling and it really puts the disability demons in their place.
This is how I feel about my nieces and nephews! They didn’t know be before, and so the way I am now is normal to them! They help me do things and adapt their games and plans so easily without batting an eye. When I visit they will hang out with me in my room and snuggle up. I don’t have to try to sit up like a “normal” person. They will even hold the screen so we can watch something together. It’s so nice to be included and not judged and to not have my inability to do certain things be the elephant in the room.
"You'd be shocked at the things I've done with a horrendous migraine"... oh yes! When people talk about headache vs migraine I often hear people say "if it was a migraine then you wouldn't be able to use a computer, get groceries, etc etc!", but when migraines become daily/weekly you can't avoid all tasks for the rest of your life! I used to work with full on migraine auras - the display cabinets would actually set off the auras, but the manager didn't think it of importance 🤦♀😱
The one time medical staff took my pain seriously was when I had "left over" painkillers after my appendectomy since it didn't feel worse than regular headaches, even if it was enough worse than a period to make my aunt diagnose me.
@@fionafiona1146 😥🫂
until I got a proper diagnosis I had pretty constant migraines for twenty years. Actually most of the time I got on with my life. Now they're less frequent I can't function with them like I used to and I have no idea how I did it.
@@anyakimlin6702 sorry to hear, how did you end up diagnosed and what changed since then?
Migraine life - I can’t see properly, my face is exploding and I need sunnies and earplugs to exist but I’m still doing the grocery shopping.
As someone who is disabled, raising a disabled child, we take a lot of time on the small things. And because of it we have a very strong bond
You two made me feel like I'm not alone.
❤️
My mom is disabled (paraplegic - T12 complete SCI), from a car accident in her early 20s, before she had children. It's truly incredible how far assistive tech has come since she was rearing two young children in the 1980s. She's now a grandmother, 40+ years in a wheelchair. It hurts me personally when people are discouraging to people with disabilities becoming parents, because you don't need to be able-bodied to love and nurture a child. I'm thankful for you all sharing your experiences. 🥰
I’m with you. I don’t know why people think that way. I am 51. My Mom had me right after she was diagnosed with MS, by the time I was 5 she was using a wheelchair and she raised my brother and I just fine.
"You just do it." Exactly. As a single mom with fibromyalgia and having a child with profound autism has been interesting. People always ask me how I do it. I'm like "I have no choice? I just do it."
My mom is hard of hearing and that honestly wasn't nearly as big of a deal to our family as some people might think. I genuinely often forget that this is a thing about my mom because I'm just used to it and it's our normal. She has never been any different for us kids.
Other people though have reacted sometimes very offensively and that's with my mom not using hearing aids or otherwise being visibly disabled. She speaks and doesn't know German sign language, I actually know a fair bit more than her just because I thought it would be good to at least know the basics.
Did have to pretend to be my mom a lot as a child though and definitely always had to have my keys on me because she wasn't able to hear the doorbell ever. Lots of small things but you are just used to thst if you grow up like this.
same here! my mom is deaf and that honestly affected me the least of everything when i was a kid
@@theforestsongz Awh, for both of you that's genuinenly great to hear! I'm not hard of hearing, but ofc disabled and one day I want to have kids so just reading those alieviated a lot of my fears. :-)
Lack of community in those 1st years, not knowing I had hEDS and being unmedicated, undiagnosed autistic, and POTS - was so isolating. I'm still healing from it. It got a lot better! But whew, it was hard.
I'm hearing, but learned asl(as best I could with no one around me to practice with) and I didn't understated that baby sign was even a different thing, so I taught my kid asl. It was super useful bc she didn't talk until she was pretty old, bc she's also autistic, and she had the option to speak w/ her hands. She had 100 signs by 2 years old. It was so great.
Oh hey another autistic person with a connective tissue disorder. I'm starting to think there might be a trend. My girlfriend randy has Marfan's, my girlfriend saina has EDS and I have severe joint hypermobility. And we all are autistic. all of us have chronic full and partial dislocations and subluxations (where the joints pop out but then snap back in place) we've gotten really good at putting each other's joints back in place.
@@michellethiesen7972 researchers, doctors and the patient community have definitely noted the connection! To the point where if you have one, you should check for the other.
Unfortunately, as usual, the doctors are far behind the patients and researchers on this topic. So we're the ones leading the focus.
I loved this! I am a wheelchair user and have osteogenesis imperfecta. I am getting married in October! My partner and I are obviously super excited, and having all the fun imaging the future kind of conversations. But having kids is one conversation I've had a hard time with. I have always known I wanted to be a mom one day, but have struggle with knowing what that looks like. This was super encouraging to watch!
I’ve had chronic migraines for years now, but have only been diagnosed this last year (I also have other disabilities but I’ll focus on those)… and something I’ve noticed from able bodied people is that they tend to think in extremes. In the sense they either think “migraines are just a headache, you can still do the same things that I can!!” Or they think “oh that must be terrible, let me do everything for you!!” They also seem to think we don’t know how our disabilities affect us… that’s just my experience though.
Yes, it is a common attitude that somehow a disability affects your intelligence, even if that disability is entirely physical. It's one of the worst things about so called 'normal' people.
And it's so annoying. Especially when other people with migraine judge you too. Cause either it's "It's not a real migraine if you can get out of bed" or "I can work through my migraine, why can't you?". Like we get enough crap from able bodied people, can we skip the infighting please?
Ive been diagnosed with chronic migrane for like, a year and a bit? Had it for two years though ive had times where im doing online school with audio from my phone in the dark bc every stimuli is actually unbearable. To going on holiday with not really any symptoms, to having to work through a lot of assignments with a migrane lol. It comes and goes tbh
Absolutely.
I have an intellectual disorder (nonverbal learning disorder), as well as a few hiccups in my physical body. Abled people can absolutely drive me nuts.
It's either "learning disorders are classroom exclusive, stop complaining" or "you are a drooling pile of empty-skulled misery, I need to save you from your inabilities". It's rare when it's in between.
My disorder is disabling. Before it was treated and managed, I was nonfunctional. My learning disorder guts the toolkit of functional in-built skills people are typically born with, and basically leaves you with a spoon and a wrench and a note that says "good luck!" It affects every part of my day, every day. Before treatment, I could barely form coherent trains of thought, couldn't keep focus long enough to complete a task, couldn't remember things well enough for my memory to be of any use, and so on. Now, I'm functional. My disorder is still disabling. I have a hard limit of stamina. If I go past it--if I push myself too hard--my brain will break, and I will develop limitations nearly identical to dyslexia, dyscalculia, and (on really bad days) dysgraphia. My brain will not be able to string together thoughts well enough for me to speak or understand language, so I go fully nonverbal and my audio processing shuts down almost completely. (The sound the parents make in Charlie Brown is about what I hear.)
But, while my disorder is disabling, I'm also perfectly capable of taking care of myself and my needs and I live an almost entirely normal life. I don't need to be coddled or pity, but I also don't need to be dismissed or invalidated.
Lol! Loved the typical parent error on not quite being sure of the age of your child. I have said my daughter is anywhere from 9 to 30 years old depending on where my head is. (She’s 27)
Jessica narrating that pub story in “whispered” signs is entertaining
As a non disabled person I love watching your videos Jessica! I love learning more about how disabled people cope with a world that doesn't accommodate to them. It has helped me become more compassionate about those with disabilities and I have made a few disabled friends at school now! Thank you for educating me and so many others! (ps Rupert is so adorable you are an amazing mum)
Just wanted to say, this makes me happy to read as a disabled person! It should def be the norm, but it reminds me of when my girlfriend went out of her way to read up a bunch on my conditions to better understand what I go through. I'm sure your friends appreciate it a lot! 💛
When we have kids, my partner and me have both decided to teach them BSL. He struggles to learn it because of his neurodiversity but mine makes me incredibly good at remembering and learning (we’re a good balance for each other). Because of my own disabilities and from working with a lot of disabled children as part of my job, if we have a disabled child, it really won’t be a big deal for me, it’s just a part of who the child is and we’ll just have to find the right things that work for them.
Finally a collab! I'm such a big fan of both of you
Awh, hope you love it! 💖
It was such an interesting video! I'm disabled, but don't have children, and you opened my eyes to few things. Firstly, I don't have to be on 100% strength all the time. It's okay to rest. Secondly, now I know how people manage to use buggies while using wheelchair. It was fascinating to hear about the inventions that are helping disabled people. And the part about 'what is the worst thing' and the concept that it's not always the thing that people think is worst, but something that bothers YOU the most is really important thing. For me there is back pain and migraine. Not the constant mood swings of bipolar disorder. But there was a lot of people thinking that I'm used to pain. Just because I experience it for the most part of my 27 years of life doesn't mean that I'm used to it, Glenda.
I grew up being the oldest AFAB person in a family of 7 kids. The amount of responsibility that was foisted on to me was enormous! But as a result I am a child free person who could take care of a child at just about every age.
I hope you still had the ability to be a kid despite that! I'm sure it was challenging, a lot of the caretaker leaning people in my life often neglect themselves, so just checking in. :-)
@@meltedmarshmellowpeep Nope, not really. Anytime I tried to act my age I was scolded or worse
oh no not oldest daughter syndrome :( I hope you're able to let yourself be a kid now
@@AdorableAcushla Jeez... I'm sorry, that's not something that should ever be put on a kid. Like the other commenter said, I hope you allow yourself the ability to enjoy things you maybe couldn't before. Sounds like an overall unhealthy situation, but I hope distance and time have been kind to you.
Two Queens in one vid 👏
👑👯♀️💖
@@jessicaoutofthecloset your an icon gurl
I love both your perspectives here! One thing I want to say, as someone who grew up with a disabled parent, is that your kids will also learn so much by watching your abled partners be there for you. They’ll learn about unconditional love and support and they’ll have an incredibly high standard for relationships because of what they see in their own family.
My disabilities are fairly minor, but I’ve been really nervous about being a parent. This type of content is so reassuring, educational, and helpful!
"You do not need to have it all sorted from the get go." So important. ✨
Thank you for giving me the tools to advocate for myself. I changed my dr as my previous one would tell me cfs is in my mind. Im now going to see a rheumatologist hopefully for diagnosis finally. Before watching i was always down and didnt know what to do about it. Now i want my life back xx
I can't load all the comments so I don't know if someone has already said this but I felt I should say that the Smart Drive isn't the only power assist option and it's really not the best one for people with EDS.
It's possibly the cheapest so a lot of people go for it but it needs you to be able to steer or stop the wheelchair under your own steam and that can often cause hand/finger/wrist/shoulder dislocations.
They have also had a lot of issues with it not always connecting well with the watch. I have heard the new version is more reliable but there are safer options if you have joint or strength problems.
If you can have your arms out in front of you then Firefly type add ons are good, they turn your chair into a mini scooter/trike type thing. They are great for more off road options because they lift the casters slightly and add a bigger front wheel. They do involve you being able to hold the handlebars though. Powered wheels are great if your car can deal with the weight and you can take them on & off. They give you the most control and you can have ones you control by pushing the wheels and ones you control with a joystick. They can always be swapped out for normal wheels again. They are heavy though.
I have a light drive and it goes on the back of my chair and pushes the chair by attaching to the wheels. It needs really high pressure wheels to work and I have to pump the wheels up regularly. It also means I can't adjust the back of my wheelchair for more support because it changes the width of the back of my chair and then the drive doesn't clip on. It also takes up the whole of the back & underside of my chair so I have no room for a bag. It has been useful but it wasn't the one I picked and I can't fully recommend it. The starting and stopping is not smooth and has made my neck spasms worse.
Anyway the smart drive isn't the only option out there and isn't the best for people with strength or joint issues. Check out reviews by people with EDS if you are looking in to it. For a lot of people it's the only one people know or the one insurance will cover because of the cost but be aware of the issues.
We have something awesome here in Southern California called the “Rolettes” (Rockettes but with wheelchairs). So awesome 🥰
I absolutely love them - I'm from the South of England and started using my wheelchair a couple of years ago and they were one of the group the made me realise that wheelchairs gave you your life back, rather then limited it.
I’m so happy for this collab! Two lovely disabled people that I follow discussing parenthood!
You both look stunning omg 😭! Great outfit moment!
And as long as love is involved in the parenting it’s gonna work out just fine 😌. All my friends with parents with disabilities turned out fine and have really strong bonds with lots of love and respect.
As someone with ME/CFS and a wheelchair user, the buggy issues are real. But fortunatly I could use ours as a walker since it was so big and sturdy. My husband is a giant and since he'd be the primary (able bodied) parent, the pram needed to be adjustet to him. I tried baby sign to teach my son signlanguage and encourage him to communicate. But by that time my husband had signout from the relationship and parenting. He refused to do anything that could have improved life for me if it didn't include any improvements to him. So "waving your hands around" was apparently stupid. Turnd out our son is autistic and didn't start to talk untill 3,5 years old. Sign language would have been perfect and made both of our lifes much easier.
I think the biggest issue for me is that I can't play with my son. No going to the park, no playing with toys in his room. Not even reading to him. I just don't have the energy. Being chronically exhausted to the point where you don't have the energy to even lift your arms or half time get out of bed makes parenting difficult. So anyways, I did gt out of bed, made sure he had all the things he needed (food, clothes, took him to daycare and doctors and so on). I have basically been a single parent for the past 5 years. Our son is 7 now and I'm the only one who makes sure his speech therapy is on point, he has clean clothes and healthy foods to eat. I'm completly alone since I have neither family or friends, nor the energy to find a support group. Only other ME parents understand what it's like, and they hardly have the energy to be online either. The ASD/ADHD communities are wonderful but lack the understanding of how life with ME actually is. Everyone I know calls me lazy because I spend all day in bed, just so that I can have the energy to spend the evening with my son.
and since I can't work I have no income, so even if there are many usefull gadgets out there. I wouldn't be able to afford them anyways. THe perk is that the older my son gets , the more help I get from him. He has been doing his own laudry since he was 5 (on his own will, he finds it fun so I'm not going to stop him). He'll grow up to be a good ally to everyone.
Your story is very similar to mine I'm glad I read this not for what your going through but to know I'm not alone. You are an amazing parent if you do all that an still really struggle with your illness like me. Ur son will be so proud of his parent when he understands more. My son is 8 also I have m.e and fibro and other conditions. Only us parents with chronic illnesses know how it is. Ignore other people I've also had the same abuse from nasty people they dont understand. You are not nor ever will be lazy your far from it as you know. People say nasty shit to make themselves feel better about themselves which is messed up. I don't have to prove anything to anyone and never will.
Oh, the happiness, joy and positivity in this video. I think that it will be a favourite for a long time. xxx
I have EDS, am floppy too, and lack balance. What bothers me the most is the chronic fatigue and the body aches from any exertion (including sitting, if my back isn’t 100% supported and relaxed). Secondly it’s the dizziness from the POTS (I also get it from sitting too long with my legs down, as people normally do), and strangely the chronic sinus, and lack of air filling my lungs and oxygen getting in my brain (the breathing muscles, for example the intercostals, are under developed, and lazy to expand properly). Third stomach pain/heartburn etc… It’s all connected to EDS, according to my doctor. But nobody would guess any of this, just by looking at me! :P They only may think I walk a bit differently, from being too flexible and unbalanced, for example…
I have to admit, watching the way you lovely ladies parent your amazing children hurts. With my first I was so close for the first six months, and then I had to go back to work. With my second I was only home for two weeks. The person who they were left home with was terribly inattentive to both children, and mistreated them. They are amazing kids, and I love them both dearly, but there are so many things that you are giving your kids a great foundation for that mine missed and it is causing us struggles to this day. I love watching you parent, but it hurts because I wish I was able to give my kids what you are giving yours. Bravo!
I love you both individually so together is like the cherry on top!
I always thought growing up I’d like to be a mum. Recently I’ve sort of been thinking that for medical and personal reasons I probably won’t have my own kids, but I do get to be the greatest Aunty I can be to my best friends kids and my nephews. I’m great for days out for the carer tickets or discounts
"I saw it and I knew it was possible" @15:30 Beautiful, and I hope this video will help people see it is possible too!
Watching this recovering from gallbladder surgery. Thankfully I have lots of help from my husband and sons (youngest is almost 15). But I’m still “parenting” getting our youngest ready to start high school.
These two are absolutely lovely to see together
Wow, I didn't know these baby carriers and options existed. Thank you so much! That might come in very handy when babysitting my grand kids if my fibro worsens.
I think it's a very good idea that you taught him BSL! And I think if your kid is the shy type, it might also help him feel freer to express himself in a social context if he feels what he says to you remains shrouded from the understanding of others, it's less embarrassing for him to ask questions and all...
Kids are very loving and understanding. My son was very helpful in helping me get out of bed some mornings my limbs refused to cooperate and now that he's an adult, he will run errands for me on days I would want to do them myself but am trapped in my body. I'm very thankful for him.
Aww. Gem is so positive. I love her
I recently subscribed to Gem, and it's lovely to see y'all interact!!
I don't have children yet but I get what what you mean by just adapting/doing what you need to do in whatever way you can. When I'm brain foggy/fatigued/can barely breathe, if I am needed, I am needed and I do what I need to do. It doesn't really help with my loved ones not getting that I actually have a chronic condition, though
My daughter just turned 19 on the 10th. She and her brother went through me having a chair or crutches or rollenator etcetera. So glad to see this. I just had newsgroups!!
Thank you both SO very much!! ❤️❤️
Jessica i think you could have a use for a victorian button hook. The reason you are describing is the reason they made them.
@James Thomas I'm okay
My sister and I are disabled and we’re raising her disabled teenage daughter. It’s a lot of work, but it’s worth it.
Two of my favorites, what a great surprise!!
Being deaf and wearing hearing aids is no big deal to me...it's my normal since I was a little kid. 😊I don't feel any different than other people although I know what you mean about "ableism" that I sometimes get from non-deaf/non-disabled people. I really enjoyed both of you in this video! Thank you both for a great video! ❤
I’m so glad you all mentioned how expensive it is to accommodate ourselves. I will admit to having a lot of uncertainty about how to parent with my disabilities. It was nice to hear specifically about how disability has aided in parenting. This was such an amazing video.
I thought this said Barbies, Wheelchairs and Chronic Fatigue and was confused for a second 😂
omg you two are so wholesome
Watching this video is very informative and with raising your boy the way you are He will probably grow up to be a very rounded person .
ahh i remember your collab from ages ago!! you talked about how much you wanted to be a mum, and now you are a mum!! :')
This was an incredibly informative and beautiful video! You two are amazing! Great collab!!!
I just want both of you to know, that you influenced me by giving me the confidence to become a mother. When I became a wheelchair user, I didn't think motherhood would be in the cards for me anymore. Now, my son is almost 5 months old, and boy does he love riding in my wheelchair. 🥲 Thank you ladies.
This comment is just so wonderful... 🥺It gives me hope that one day I can be the parent I want to be while still being disabled. Your son sounds so adorable, and I wish both of you the best!
@@meltedmarshmellowpeep You can totally make it work! It just takes some adjustments, but as disabled people, we are used to that!
Thank you so much for your well wishes. I wish you all the best as well. 🥰
♥️ beautiful...
I'm autistic (with a couple more disabling mental illnesses) in my mid 20s and I reaaaally want kids before 35. For personal reasons, but also because both me and my partner are trans so the probability of a successful assisted conception goes way down after a certain age.
Right now we live in a small studio, I can't work full time and we're just learning how to handle a household on our own and just... Being independent and not live like students. And I must say the thought of having kids in a few years is a huge motivator in learning how to live and function with both of our brains and bodies. We agreed we won't have kids until we can handle life without them. So we have just have to do it.
So far respecting our limits and learning new systems and ways of doing things has proven the most critical.
Jessica looks like a princess. ✨✨✨✨👌
I totally get just managing with severe migraines and chronic illness with a baby.
I became a mum and then 17 months later a single mum, he's four and a half now and I have gotten through so many things that i never would have imagined I'd be able to deal with.
I've had meningitis, many many flareups with pleuritis and costochondritis, bad asthma, and this year a 9 day stint in hospital that is still a mystery.
My sister is child free by choice and I feel like women face a lot of stigma for not wanting kids, but just because someone doesn't personally want kids doesn't mean they aren't also an adoring, doting, wonderful auntie.
And despite how hard it has been sometimes, I've smiled more in the past 4 years than the 27 years prior
Hi Jessica. I found it really interesting to find out how another Mum coped with motherhood while living with a disability. I was lucky I had a friend who was in the same boat as me sort of she has a 4 year old and a 5 year old as well where I only had the one. Her husband was very surportive of her when he was not working mine on the other hand was not.
I've decided after watching Jessica's videos that I will teach my children, whenever I will get blessed with having them, sign language by making it fun quality time spent together. I am not disabled, but I had interactions with hearing impaired or hard of hearing people. So yeah… 🙂
Chronic migraines run in my family, and personally the most I had to do while having a really bad one was sitting through a 2 hour class, but my mom, she raised me and my sister alone, so she could be having the worst migraine ever and still have to get up and take care of us. I honestly don't know how she did it.
another great thing about raising them as disabled parents is that if your child/ren turn out to be disabled themselves, its not new and weird. My kids haven't known me able-bodied, they understand I don't have energy and everything hurts and whatever, and now that my tween is being investigated for some very familiar symptoms, even if it doesn't turn out to be fibro, they know that someone gets them with pain and fatigue, they know that they are normal and not 'broken', and they have someone automatically believing them
And it works the same for being neurodivergent and mentally ill - when anxiety and depression rear their heads, even in early childhood, we were there to understand and believe it. I'm there to understand the way that adhd/asd makes our brains sometimes. It's a built in (tiny) community
There are times my disabilities have made me a bit of a disaster as a parent, particularly when life changed and I had no carers. However, they're now 19, 16 and 13 - and they are truly lovely people, so I figure we can't have been that bad as parents. It's so nice to now have the evidence that we did OK.
Mine is almost 8 now, the baby years discussion really brought things back for me. I had a hugely frustrating time searching for equipment to help and was constantly told by Occupational Therapy that nothing existed!! (I discovered independently that that wasn't true, but it was still limited). Sadly my daughter hated baby wearing - wouldn't tolerate any baby slings - which as a wheelchair user was a bit difficult! But she adored sitting on my lap and still tries to lol
The friends bit, "What do I do with a baby?" 🤣🤣🤣
For some reason, I always thought DB was younger than my youngest, but actually they are both 13. I'm finding it a lovely age, sure there are teenage bits, but it comes with physical ability and competency too, I never asked her to do stuff like load my wheelchair in the car, but she's been watching and learning and jumped in the moment she could.
This was a great video and I appreciate everything both of you brought up everything honestly and openly. So glad you brought this on your content and appreciate everything now in the community and aware of what products can assist you at anytime. Thank you so much for sharing this great video and you’ve made me realise how lucky I am and appreciate all the effort you both bring the content you can
21:43 "i cant hold you back from eating your friends" oh the wonders of subtitles 😂
Thank you both! 💖
My husband and I tried to adopt through the foster care system in the US a couple years ago, and we were surprised that they declined both of us as ineligible due to my disability (muscular weakness) and his type 1 diabetes that is not fully under control due to being a little overweight and insulin therefore working inconsistently.
Can I please please have a list link of the equipment mentioned in this video? That pram that helps you on slopes sounds so handy! I'm a wheelchair user and want to have my own children one day but am honestly quite nervous about the up hill battle. Leaving me wondering can I do this at all?! This video really helped me on this journey thank you ❣️
What a fantastic Collab!
i also have chronic pain and i suppress my pain so much to not be a burden. i’m too afraid to be honest abt my pain bc in the past i’ve been told i that it cant possibly be that bad but it just is. my parents also are always telling me that i need to help out around the house more but it’s physically so hard bc of fatigue and pain. like i try but it just doesn’t work out.
sorry for dumping my crap here - i just needed somewhere to let it out
This is like watching a video of two cartoon princesses talking about being mums lol
Yeah, I got swine flu in 2009. I got pneumonia so bad I coughed up blood for months and almost died. I had to drop out of university and it was terrible.
The swivel car seat isn't sold in Australia as it doesn't meet whatever standards we seem to have. 🤦🏻♀️
I’m an Early Childhood Educator (ECE) in Canada. I worked at a daycare where the kids helped me out what we in my j-tube. I’d have them all line up wanting to help. My mom owned the daycare we had 4 toddlers born between March and June so basically all the same age. They loved helping it was hilarious. I have other health issues and they learned early on that people are different and the parents loved it
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Thank you SO much for making this video! Very timely for me. How do you manage with sound sensitivity, weakness, and increased symptoms with lack of sleep? Also, I am assuming the following may be common questions too - how would one manage financially for all those great products if they are disabled but not able to work or their govt doesn’t “recognize” their disability and therefore provides no support?
A superbly presented video.
Awesome video!!!
And almost to a Million! Love your channel
Very cool video to watch, it's nice to hear this conversation!
you are both so beautiful, thank you for sharing this ❣️
I feel like it's a universal message.
hey i also have EDS and so does everybody on my mothers side of family
we need to set up a point in the area people can come in and out to drop of and pick things ao so that when they age out it can be pushed out to those who need it
so sweet, also if Disney ever gets around to some real life disabled Princesses... they should look like you two!
Omg me and my friend got swine flu at Christmas in 2010 :( it really was dark. Sick on Christmas day... both of us were on the phone and crying about how bad we felt and she knew she was getting sick but still invited me out to cinema and a sleepover :| I never let her live it down
I love this wonderful woman xxx
I had swine flu with a six month old, plus a 6 year old and 4 year old also ill with swine flu!
and still figuring it all out 8 years on... 😆
My mom taught me sign language when I was younger because I just refused to talk, I wish I still remember how to now it’ll be so useful :’(
I recommend trying to learn! You'll have an easier time learning it because you used to know it.
AAAHHH MY FAVE TH-camRS 🥰
1:15 In 13 yeas time you'll rewatch this video and laught even more.
I don’t have kids yet but I have chronic pain and pots I use a cane when I have to( sometimes not cause people stare) my one fear is that I will get worst and have no choose but to have a wheelchair or roller. But I’m stubborn
I love you 2 so much, but as a man, in a wheelchair, with 1 good limb [right arm], who wants children...it seems like i'm going to have a wife who's incredibly understanding and willing to do most of the nitty gritty of raising our future children.
You'd be surprised - women often go for personality above all else, your future wife may well be absolutely fine with you and what you bring to the relationship.
"THIS TOO SHALL PASS
It DID
You DO"
Very regal! :)
It's Gem! I love her channel too :)
Thank you for introducing me to other marvelous people on youtube! You would think that the algorithm would take care of that, but of course it doesn't...
ooh i’m early! love your videos 💗
I work in a childrens soft play area and didn’t know that baby sign was a thing, so when I saw a child signing back and forth with a parent I struck up a conversation about BSL and the mum awkwardly had to inform me that no in fact her child could not communicate with deaf people and this wasn’t useful once he could communicate verbally
I genuinely don’t understand WHY baby sign exists when sign language is already a thing? Surely it would make more sense to take basic signs from sign language to use instead???