Can I ask who does your captions or how? I've been trying to stop acting like I can fake my way through all audio all the time but most TH-cam videos I see have either really weird captions that don't seem to be actual language, or are just the machine guesses. I know TH-cam's caption policy changed, though.
I feel like in the disabled community our identities are almost stolen by certain parents. for example, a lot of mothers of autistic children call themselves 'autism mums'. Like, no, surely I'm the Autism mum, and as actually autistic mum! haha! googling 'how to cope as an autistic parent' brings up very different advice than I might like.
I can relate to that as an ADHD woman. I'm not a mom yet, but looking up coping mechanisms for me often pulls up "coping mechanisms for your child" which is a bit annoying.
I've noticed that with parents of autistic kids, I can imagine how maddening that must feel! As an adoptee, I have a similar issue finding resources for adoptees/by adoptees. So much is about adoptive parents (and/or the algorithms are set up with that bias) and it's difficult to wade through to find what I actually need. Solidarity.
@@demolitionwoman_OFMD That's true about the focus of the adoption experience is usually focused on the adoptive parents not the adoptee and the parents often fight to keep the narrative at all costs imo
not a parent but its truly irritating when you look up adult adhd related things and its all just about parents of adhd kids... like :/ what about us as ADULTS... its almost like they’ve infantilized neurodiverse folk and just assume adults don’t have problems anymore or something... its just weird
I just want to say re: your split schedules is a brilliant idea, I have friends who did that with their baby because they found it worked best. You should give yourself more credit, you and Claudia doing this as a team, you are the furthest thing from useless, Jessica!
Yep, we are a co parent team too! Almost 7 years now, it’s given us all time together through so much that I’m forever grateful for and she’s had so much time with both of us
Split shifts with a newborn should not be controversial. It makes so much sense. Hubby and I did it too because he works a very physical job so needs his sleep. This strange idea some people have that both parents have to get up every 3 hours and everyone be exhausted is absurd.
Yep. I did "night shift" and Daddy took over at 6am so I could get a couple hours uninterrupted sleep. He's of no use to me when he's tired and grumpy! I think *most* parent-couples I know ended up doing something similar with one parent doing night shift (whichever one that was best able to fall back asleep) and the other doing daytime so the night parent could sleep.
My husband works shifts that rotate every 2 days. We had a schedule that worked around whatever shift he worked that day and his off days. Do what works for your family and make sure everyone gets some sleep.
Yea that's crazy talk. I watched this video of a woman and her male partner sleeping with their toddler and the toddler would wake her up all night to breastfeed and the man kept sleeping through it and everyone in the comments was dragging him saying "what does he even do?!" And calling him useless and lazy, but what if she's a stay at home mother and he has to wake up at 5am to work a 12 hour shift in order to allow her to be able to raise their child without putting it in a daycare to be raised by them while she also works outside the home...people choose to have different roles in some partnerships. Everyone is still equally important.
Forgetting diapers is totally normal. Being a parent doesn’t come with instructions. Judging by the twinkle in your eye as you speak about your baby boy, you’re doing an amazing job
Absolutely! I'm a neurodivergent parent with spectacularly terrible executive function married to a neurotypical for whom responsibility is practically his middle name. You want to know who is more likely to forget to pack diapers/wipes/spare clothes/toys/snacks/etc for a solo outing? 100% him. Anyone can forget to check the bag (actually he usually just straight up forgets the bag). Anyone.
@@lindaleriel “he straight up forgets the bag” 😹😹😹😹 it happens!!! I don’t have children, but I have raised enough nieces and nephews to know the “parenting” struggles
I often used to think I made more mistakes than non disabled parents, then I discovered that wasn’t the case. It was a revelation, took a while to realise we all just do the same things as parents, just in different ways
11:49 I didn't realize I had a word until my therapist pointed it out. "Burden" is the word that upsets me. Its not a word I've heard often, but its definitely the one that makes my stomach sink.
People are so quick to use it without knowing anything of our actual disabilities or how they affect us or anything of the rest of our lives! It's helpful to trace it's history and know that it comes from medical parlance about the financial 'burden' of illness on society which is in itself an underpinning notion of eugenics. We are part of society and it's insulting to compare us to criminals or highway upkeep which is what this effectively does. Lots of people make people's lives intolerable - ''maybe we should be weeding out the gene for politicians and tax evaders?'' (Francesca Martinez) As an example ' It's an insult to my lovely Mum in law for example noone but a monster would think caring for her was any such thing - she died of MND but it was her life mattered - she was such a person! Now by contrast her daughter, my sister in law made our lives a misery because she was toxic and abusive, and her husband and kids became ill from the stress (I lived near them and it nearly killed me!) Her husband and one of her kids actually escaped her by dying . She had money, health and wealth and she was evil. Maybe we need to reclaim the word the way 'queer' has been? Not easy but when I think of all the toxic folk out there why should we have this label?
Mine's "Lazy". I'm 31, and only recently have I felt comfortable with slowly reclaiming it in non-judgemental phrases like "I had a lazy Saturday morning just relaxing in bed with my cats".
The kitchen sink is perfectly fine for bathing babies and it will save you hours of back pain.... something I wished I'd figured out months earlier. It's especially convenient if you have a little sprayer hose thing with your sink that you can use for rinsing.
My parents used to bathe me on the sink or on a table in a special bathtub she had for... Idk how long. It was useful for her but it was also useful for my grandparents, since the first few months we lived with them.
My parents literally replaced our split kitchen sink with a farmhouse sink specifically for bathing my younger siblings. It’s just too easy to plop a kid in there after a meal and hose them down to not do it.
Yeah let's be honest I wished I'd figured that out a whole kid earlier. Sitting on a high backed stool at the sink when I hurt too bad to stand was a lifesaver. With my oldest I used to get in the tub with her sometimes. I'd put just a few inches of water in and lay her on my thighs with her head at my knees and wash her that way. Ideally I'd hand her off to my husband and then continue to bathe myself or I'd have a hooded towel laid out on the floor to wrap her in for a few moments while I dried myself off. It's still a really nice bonding skin to skin experience I think, but way more of a hassle than the kitchen sink.
Jessica, I’m so sorry you felt excluded from the ante-natal group. I know this goes without saying, but I’ll say it anyway: you’re just as much a mother as anyone who has given birth-more than many. And you’re extremely useful, both to your little family and to a much larger group, as your recent award has shown. I know you must feel some grief about not having been able to carry a baby yourself, but who carried him will not matter to Rupert. Who loves and understands him is what will matter, which clearly you and Claudia are both doing amazingly. 🎀💖🎀
she is a Mum where it counts ! She's present, works, cares, nurtures, makes plans/decisions and LOVES Rupert beyond measure !! It's about love ! And Jessica and Claudia both have that in huge amounts !! yay
Considering you live in the Brighton area I'm really surprised you would get this kind of reaction from people. I hope they learn to be more compassionate and accepting.
Momming with Migraine is a really good and informative channel about a woman with POTS and chronic complex migraines (and potentially a CSF leak) and she's currently pregnant with baby #2. She is a very small and recent content creator who doesn't get nearly the attention she deserves.
Not sure if you have mentioned or met "Stump kitchen" before, but she is a mum with a limb difference! I think her baby is a few months under a year old, and she has made quite a few videos about being a mum with only one hand, both before and after having her baby. She has talked about her own experiences as a parent (and her worries prior to giving birth), and she has talked with other parents with limb differences about their experiences.
Also check out Paralyzed Living on TH-cam, his back catalogue includes videos on how he cared for his daughter when she was a baby. I don’t know if his tips will work for you but I wanted to shout him out!
I became disabled when my daughter was 3, and she is now 13. The areas that are difficult have changed as she changes. She is a HUGE help now, but I dislike putting too much pressure on her. I think children with a disabled parent learns compassion and willingness to help in a special way. But I’m cognizant that it can be hard. And even embarrassing at times for her.
Lynn2574 · Having anyone in your family with a disability, can help children become a much more compassionate and caring person. She probably is embarrassed of you but not because of your disability, but because she's 13 and you're her mom. When I was 13 there wasn't any girl who wasn't embarrassed of their mom. Hang N there before you know it she'll be passed this stage.
I became disabled when my kid was five. I’m kinda glad they were older- at that point where I no longer needed to carry them for anything, because that became completely out of the question. I think something that a lot of disabled parents don’t talk about is the guilt. That you’re not parenting your kid/s the way abled parents do, that your kid/s had to grow up a bit quicker, be more independent, help you out more. There’s a lot of guilt that comes with that.
I am so thankful when my youngest entered college my MS keeps me using an assistive device. When he was younger I could still walk and work. He doesn't complain as much as me. I'm frustrated with my lack of motor skills.
How has it gone this quickly already seems like yesterday since the pregnancy was announced I love the family and the content u make it’s honestly makes such a genuine change to see all the amazing content on disabilities and what it’s like to live like this in today’s society
It is so validating to hear another parent say they are unable to function without sleep. That some people can't just push through the mental and physical consequences.
My partner has ADHD and the only way he remembers feeding our cats in a timely manner when I'm not around to do it is by them just screaming at them to remind him. Even he can't ignore two big and loud hungry Bengal cats. They have a very accurate inner clock too so at around 6pm they start reminding him of his existence. We don't want kids but we both know we both would struggle for different reasons with keeping up with a child. I know I can handle it because I was my nephew and oldest nieces sole caretaker for two weeks each month when I was a teenager but I also know I never want to experience that kind of stress again.
I don't like it when you call yourself useless. 😥 Its the internalized ableism, I know it well, and have the same thoughts about myself. People don't exist to be "of use." Just needed to say that. 💖
I made a complaint to my vicar once about a sermon by someone else talking about how his granddaughter had been "useless" and that after she died he realised her bright attitude had made people smile and that made her "useful". Obviously a hugely brief summary, but he said the word "useless" over and over and over. I still shudder when I remember it.
OMG your sixth sense for Claudia and Rupert being in trouble is amazing! It's like Miss Clavel from Madeline waking up in the middle of the night saying "Something is not right!"
oof that "one word that sets you off" thing is so true. Mine's "lazy". Living with ADHD and depression and now chronic fatigue syndrome I have a lot of unwilling "lazy" time where I'm recovering or getting stimulated after doing something boring and abled neurotypicals *really* have a problem with you not filling every moment of your day with "useful" activities.
Mine is "sensitive" (anxiety, ptsd, and likely an undiagnosed autism spectrum disorder). I've come to see it as a strength over time, but it still stings hearing internalized past voices call me "too sensitive". Sending you lots of love and hope you're able to get in ample rest and self-care
Yessss. I hate that word so much. To call my behavior lazy assumes bad intent. Pacing myself so I don't collapse into a ball of misery is not the same as laziness.
As someone with a baby and a partner who has a job that has to be done in person, you have no idea how USEFUL it must be to have a co-parent who is able to work from home the whole time, be around for nappy changes, or just to hold them for a second if they're a bit sad but you really really need the loo. I miss my coparent so much in those moments and you must be so helpful to C in them!
yes anything Jessica and other disabled parents do within their own ability to coparent is valuable and instrumental and i'm sure the other parent values it immensely
As a fellow person with EDS and vacuuming...I ended up having two. One downstairs, one up stairs. I think it's a learning curve with all new parents. What works for you & family...works. From what I've heard/learned is the second child is slightly easier as you learned what works and what doesn't. You have a beautiful family. Wishing you, Claudia, and Rupert health and happiness 😊.
Highly recommend this if you have the means and the storage space! It means you don't have to carry a vacuum cleaner up and down the stairs, *and* you have a spare if one breaks.
We also have this! Two vaccums! We did get a super light big vaccum so it is possible to take upstairs, but having the second one is so useful. Means vaccuming can happen even on bad days
@@caitlinquinn79, my upstairs vacuum is lightweight. My original (& downstairs vacuum) is heavy, lost my grip too many times after I moved to a two-story trying to transport. Thus, 2nd vacuum.
This feels so heartwarming. The idea that it's hard to explain that you are a TH-camr then you're a disabled, deaf mom is actually hilarious to me. Sometimes I forget there are people out there that are entirely ignorant of TH-cam and TH-cam culture...
LOL I never thought I'd find baby content so relatable, but your face when you said "...I'M the capable one?!" was 100% me moving in with my partners and realizing that of the three of us I usually have the most spoons, which is NOT VERY MANY.
So disabled housekeeping tips! Do everything on the same floor at a time. Have a basket or bag to put everything in that doesn’t belong on that floor into. This is great for those of us who can’t do stairs much and for adhd stuff! And I can push it along the floor until it’s time to go up and down stairs. Also, invest in the lighter weight vacuum. Not just for your sake but so the little one in a couple years can help out and learn how to sweep! It’s great for kids who respond well to Montessori at that age. My child had to be held all the time unfortunately so we had to figure out which carriers didn’t put stress on my shoulder joints so I wouldn’t collapse in pain. My kiddo didn’t respond to Montessori until he could crawl and stuff. But he’s two now and responds to Montessori really well.
Great tips. I have ordered a new vacuum that you can carry over your shoulder. I'm looking forward for trying out. Disabled housekeeping makes any tips so joyful to have.
What carrier did you use? I have fibromyalgia, and my shoulders are super sensitive to pressure. I've been really nervous about carrying, because they all seem to put so much strain on the shoulders.
@@rabbit__ as FMS mum of two… first bub, around home it was a tea trolley with pod seat strapped on, and second bub a taller trolley from the rehab unit! The trick was keeping baby close, high AND safe, while minimising weight bearing & lifting. I didn’t have the arm strength to lift bulbs in and out of backpacks or even the simple front pouch, but if someone was around to set us up i could carry the bub ok for a while. Slings we’re out as I had to load my body evenly both sides, since a twist on our back & shoulders or one hip was agony.
@@monicaw3892 this would be great, but finding someone that would be able to make the videos of tips for the medically challenged. Between my own disabilities I know I couldn't right now. Perhaps there is some way that we each could do something.
As a disabled mom whose children are now grown, I recommend harnesses and leashes! They allow your small human to explore whilst still keeping them safe.
I’m legally blind and ADHD (and it’s likely I’ll pass on the ADHD part to any kids I make 😅) and the first time I saw a legally blind mom use a harness while out walking with her son was such a huge “Ah ha!” moment. I’m so glad to hear another mom with disabilities had a good experience with them!
I DID THAT WITH MY 2 SPROGS AND THERE WAS JUST SO MUCH HATE FROM THE ABLE BODIED MOTHERS AND I DIDN'T GIVE A FLYING HOOT. I ALWAYS RESPONDED WITH " BETTER HAVING MY KIDS LOOKING LIKE DOGS ON A LEASH THAN MY KIDS LOOKING DEAD ON A ROAD ". I MAKE NO APOLOGIES THEN AND I WILL MAKE NONE WHEN MY GRAND BABIES ARE ON THE GO.
@@KMMHealy I got the idea from my mom who wasn’t disabled but used one with me so I could safely explore. She once had someone stop and harangue her on the street. She just stared at them until I tried to dart into the street and she went yoink! She said the woman stopped midsentence and shut up.
@@livelongandprospermary8796 my son was that way, his sister only slightly less so but she’d listen and he didn’t until we went through behavior mod classes and then got him on meds. They both have Childhood Onset Bipolar Disorder.
As someone who feels like parenthood is such a distant possibility (as currently my chronic migraines make it tricky enough just to look after myself!) you're an absolute star and inspiration that everything's possible. Thank you for all you do for the community ♥️
Excuse my sticking my nose in your business 😜 but have you been checked for chiari malformation? I had awful unending migraines and just found out about it in February. Butterbur (the herb not the extract) has really helped reduce them too. Now the headaches only happen when I slip up and trigger them on accident and haven't lasted more than a day, usually just 3hrs.
@@aprildawnsunshine4326 no need to apologise, I appreciate the kind thought! But yeah... we're pretty sure it's brain damage from a past surgery and incurable. I'll still check it out though, thanks for the suggestion :)
I was just thinking this. I thought I would have lots of kids but then got sick and that became just something I would never do. But I just had surgery and feel so much better but still have way less energy than healthy people and will almost certainly never get better than this but seeing Jessica talk about being a disabled parent with chronic fatigue and chronic pain makes the possibility seem closer for me again. But I could never do it alone and I don't have a partner now so I don't know what will be. (I have MG and chronic migraine, not sleeping is so the enemy)
Not to say you're wrong because I mostly agree but what I find extremely difficult to relate to in Jessica's videos is their level of wealth. It's no secret that more is possible with money but this aspect of life is somehow not really mentioned in the videos, let alone mentioned as a massive privilege. I don't know about the UK but in my country significant disability is a predictor of economic impairment. Plus, being a youtuber is also a very niche and risky career. Not to mention that Jessica is not a single parent and that there's marriage equality plus fertility treatment access in the UK. I wouldn't be surprised if a not so small fraction of global audience watched this channel with huge envy rather than with "yay, everything is possible" attitude. Think about countries with not fully socialised healthcare and so on.
I'd love to see a really in-depth video about all the (disability) aids, procedures, routines, strategies you use and can recommend to other (disabled) parents. You mentionend the bathing routine and I think things like that would be a great help to other parents and non-parents as well.
I think this is a great idea. Not putting more work on two Mums, but I would love to see how you handle each routine. Floor time and bed time might be shorter for you. Using your car seat and pram would be great. These baby aids sound wonderful. And then to add the critical part to hide Rupert's face. Don't torture yourself if you can only do so much in your day. Pacing time has helped me but then that extra migraine comes on badly. 👩🏻🦲💗
Agreed. When my daughter as a baby 6 years ago we approached occupational therapy for help with aids to help me as the disabled parent to care for my daughter and were told there was nothing. So we adapted and worked out our own way. I was amazed and kind of disgusted that OT didn’t have any information available though.
Agreed! As a mom with hEDS and POTS, I’m really struggling to figure out strategies all on my own. I didn’t even know about 360 car seats until this video and I immediately went out and found one. Wow! What a back saver. Any other strategies or tools you’ve worked out would be so helpful. I’m really struggling to figure out how to get my baby up and down the stairs now that she’s 6 months+ and wiggly/throws her weight.
I have a question about Montessori: I'm really curious if there are parts of the Montessori method that you tried and found out were not a good fit for your family? Or maybe any parts that you don't intend to practise in the future because they don't seem right for you?
As a Montessori parent, they opted for a crib. That’s not super traditional, as in the method it’s recommended to start with a floor bed, but the biggest thing about Montessori is that there isn’t a right or strict way to do it. It’s about respecting your child, fostering their independence, and following their lead.
@@cheesecakelasagna I mean, a bit different, but the spirit is there! Floor beds are recommended because children can get in and out with no assistance, and won’t get hurt if they roll out.
Alls I can say is that if you send your kid to a Montessori school, switch them by 3rd grade. I stayed until 8th grade and it was a mess, in my class of 12 half of us (self included) haven’t exactly thrived in life.
@@m4ryjan3 I worked in 20 month through 8th grade Montessori school. I agree that by end of 3rd grade, the benefits vary greatly based on the school and child.
I am not diagnosed with any disabilities, butt I can completely relate to your chronic fatigue + parenting woes. My husband has fibro and we have a child about 3 months older than Rupert. I discovered very quickly that attempting to operate on a newborn's schedule induced borderline narcolepsy in me after only about a day. We implemented a shift schedule where I got to sleep from 10-6ish and hubby slept from 6-noonish every day and it worked really well, especially as he started sleeping longer stretches at night. Hubby got the admittedly easier shift when he was mostly sleeping and I got a full night's sleep and was able to function during the day. Best decision ever.
Possible tip: I kept three diaper bags at times. One stayed in the car, one stayed with the stroller, and one was the one we used the most and 'tried' to bring everywhere. The car and stroller ones were small with just the basics (a couple of diapers, a change of clothes, wipes, and the car one had a bottle and formula since I had to bottle feed).
My grandmother was born deaf and learnt to lip read - she raised my hearing mother really well and took great care of me when my mum was working. She also ran a dairy farm with my grandfather. She didn’t let anything get in the way and I aim to be as marvellous as her when I become a mother!
ALL parents make mistakes, each and every one, no matter what they say. Social media as you know is only the highlights of the day. Most people don't post about struggles, when they messed up, when they're kids don't behave, etc. Your baby boy is loved and cared for so deeply by his mothers. There is nothing more he needs. ❤️❤️
As a mom who couldn't breastfeed... I too felt so alone in that aspect of motherhood. But just remember we are amazing at being moms just as we are. Rupert is so lucky to have you as a mom. 😊
As someone who is able bodied but suffers with mental health stuff, and is in a long term loving relationship, and recently pretty desperate to have a baby, this is super reassuring to me. Just to see someone have fears, but go through it because of how much you want it and how much it means to you, well, that is everything to me! Thank you so much for allowing us to join you and your family in these private, but beautiful moments 🤍
Mental health issues may cause executive dysfunction, which means we have a hard time on doing everything lol. It affects the ability to plan, start, continue, finish and exchange between chores and day to day activities. We desperately want to do things, but it's like our brain simply doesn't give the spark to start it, doesn't matter how much you want, it's like we are stuck to the sofa or bed, and it may be hard even go get up and eat or use the bathroom. It is also an issue to neurodivergent people such as autistic and ADHD, and if you are/have both... Well, good luck! It's awful, we have good and bad days, and as most people don't know about this they will get even worse because they feel useless, but the are not!! We are dealing with something really hard and not fixable with medicine or surgery, so we gotta be gentle to ourselves and live one day at a time 💛
@@analuisa1214 Be gentle to ourselves and live one day at a time! YES! I agree. Having been through years and years in therapy, been twice in a mental health facility, different medications and courses on different aspects of my specific mental health issues I’ve learned to prioritise what is and isn’t actually that important to me, how to accept what I can’t change, like my ability to do some things, and that mental health is like a staircase and we walk up one step at a time. I wish you all the best in your journey, because if I can come this far you certainly can!!
@@nycdyke2867 It’s a complex answer, so I’m afraid my reply will be long, but to me it would mean continuing what my partner and I have together. I never ever thought I could find love like this, since I struggle with mental health and come from a very unhealthy childhood and family. I’ve sorted some of that out by choosing to part ways with my mother, and most of that family, so I have lived alone since age 15, and as I am a dual citizen my father and that side of the family, live far away, in another country, yet I have such a nurturing and great relationship with them all. To be able to open my heart to be nurturing and loving is something I never thought I would be able to do, without being severely hurt and punished by whatever power the universe has. But here we are, the two of us, in a health and happy relationship, after eight years, and I want to share more of life, and love, with my partner and the family I have chosen for myself.
I've found that explaining things to people using the "spoon theory" really helps them understand,for the most part. What they don't get is that you don't necessarily get the same number of "spoons"each day and that you don't know how many you're going to get until you run out of them. But it helps them to be it somewhat, which is sometimes the best you can hope for.
I personally like the phone battery analogy. I just start the day with max 60% of what most people get *and* it drains much faster than it should, like an old phone.
The sleep thing hit me really hard. I was diagnosed with epilepsy a year and a half ago and one of my main triggers is sleep deprivation. Before the diagnosis I was always the person to power through a night, staying up super late either partying or studying. It was really hard to "unlearn" that behaviour but seeing as I am "useless" (as you put it) for at least a whole day after my seizures it is a price I am willing to pay. I still dread the post-seizure confusion and the terrible pain of almost biting the tip of your tongue off...
@@jackoh991 i don't have children yet seeing as I'm only 20 but I'm on medication that keep me seizure free... still the anxiety of having a seizure remains and I try to get at least 4 to 5 hours of sleep in every night... i think i could also do that when I have children in the future
I want to send your videos to my occupational therapy professors as updated source material for adaptive parenting. Understanding what adaptations and considerations are relevant and useful for parents today is so important to teach new occupational therapists about before they practice.
@@HelennaRose the educational materials are all very up to date thankfully, my department is deeply involved in disseminating current literature. Just the videos showing the lived experience and what it actually looks like to access adaptive tools and strategies for parenting these days are older. For visual/kinesthetic learners like me it's much easier to get a jump on understanding how to help someone access adaptive parenting tools if I see something like this rather than reading a textbook.
There have *always* been mothers who did not give birth to their children. It’s not only same sex couples. Adoptive moms, foster moms, trans moms, moms who used a surrogate-not to mention stay at home dads. If your moms group doesn’t feel welcoming to people who’ve had different journeys to parenthood, you should think about whether that’s mainly in your own mind. And if it’s not, you should think about whether these are the people you really want to be friends with.
Cole and Charisma, from the yt channel Roll with Cole and Charisma, are an interabled couple trying to conceive and preparing to become parents. I imagine a collab with them would be interesting and nice
I cried like 3 times during this video because I just never ever thought I could have a child of my own because of my mental health problems but looking at you doing all these different things witha glow on your face because you love your baby so much and that's literally the only thing that matters for a child (that you love them and try your best) and idk that was just really emotional for me. Love you! ❤️
As a disabled woman who very, very, very much wants to be a mother, you have a way of reassuring us that it is possible, just by sharing your own experiences, and I thank you and Claudia from the bottom of our hopeful hearts. 💜✨💕
I'm a chronically ill/disabled mom. I talk about it on my platform sometimes (though it's not the direct focus). I have chronic migraines, which can also cause chronic fatigue and some other unfun things. If you ever want to discuss some parenting things, I am open to it. Keeping up with kids when you're fatigued isn't easy, but I will say that having been open with my kids about it has helped as they get older. They're very empathetic about it and even when they're disappointed because we had to change plans, they understand. I know that's not useful NOW. I just hope it helps reassure that it'll be okay. My damaged to my core word is also useless. Just hearing you talk about that made me tear up.
Hi Samantha! I have been a chronic migraineur since the age of eleven, eventually having them every day. The year my daughter was born migraines weren't the only health issue that I had but were some of the worst. Thankfully that was the same year that sumatriptan (sold under the name "Imigran") was approved & it was a game-changer for many years. I lived in S. California at the time, full-time & was immediately given the drug in tablet form, much later I administered it as an injection. It is NOT an opiate, nor does it contain anything to make one drowsy. Instead, it's a vasoconstrictor, getting at the root of the cause for most migraines. Sadly I've discovered that a lot of patients in the U.K. & elsewhere haven't even been told about the drug. To go from the misery of a migraine to almost "normal" within 20 minutes is almost miraculous. I do hope that this helps!!
@@CartePostale. Thanks for the heads up. I live in TN which has 4 of the top 10 worst cities to live in for migraines in the USA. (I'm so lucky. XD) I've tried a lot of different meds, but my migraines have multiple sources. The Emgality shot works the best, just fighting with insurance to cover it atm.
@@jackoh991 Tbh, I didn't sleep much. When I did sleep, was because my husband took over for me. Or if he was working 12s all week, my sister would come over for a couple hours so I could sleep. I didn't know I had migraines until my kids were toddlers because my big symptoms are not the pain and I don't get light auras. So when they were babies, I largely suffered through it.
I had a very similar experience (although I was the birth parent and the one with the disability) and I also wore myself out. Took a while to figure out the right balance. My trigger word is "lazy", so I probably pushed myself too hard to avoid feeling like I wasn't doing enough.
Idk if anyone has mentioned this but Living Well with Schizophrenia just put out some videos about being mentally ill and disabled with a new born, as well as older children. That could be helpful for the mental aspect of parenting!
Huge fan of them! Can recommend. They also co-parent their older kids with a queer couple. Can also recommend Multiplicity and Me, they’re a DID system and recently have done a few videos on their pregnancy and parenting journey.
I also have EDS, and how you talked about sleep just made my own body make SO much more sense to me. "I don't have reserves" is the PERFECT descriptor. I'm gonna use this to talk to my boyfriend about sleep.
The unconditional love and understanding is so heartwarming to see. Logistics problems can be solved with teamwork and if required, hired help, but the warmth and love can are priceless
I never thought about the "will this device/item work for both of us" concern until my marriage. My husband and I have a few disabilities, but he's incapacitated more often than I am. This is part of why we have a litter robot for our cats now; it's much easier for me to clean and empty than a traditional box was! I'm glad you're normalizing these conversations between partners, whether a child is involved or not!
16:32 That's such a good Claudia impression. Definitely felt her spirit for a second, haha. Also, that parental spidey-sense is so true, and it doesn't even have to be a human you're parenting on to develop it.
As someone who’s had chronic pain for 22 years from a spinal injury I’m amazed that you’re able to sleep for 8 hours a night! That’s such a blessing!! I average around 2-3 hours a night, and 4 on a really good night. At least once a week I’ll have a night where I don’t sleep at all, which is about as fun as it sounds when you’re in excruciating pain and the one thing that would help, ie sleep, is the one thing you can’t get!! So pleased to hear how well you’ve coped with being a disabled 1st time Mum. Unfortunately that was something I wasn’t able to do but I’m a very involved godmother, which is great.
You've probably been recommended this a million times, but the Dyson cordless vacuum is such a lifesaver. It's sometimes a pain to have to charge it and it is the most expensive vacuum I've ever seen that doesn't do the damn thing itself, but having worked in childcare at a few homes including one with a disabled parent, I can confirm it makes everything so much easier. It's much lighter, you can take it up and down stairs with no fuss, and it's super quick to clean up any accidents that befall young children, especially as they start crawling. Big investment but one family I worked for got theirs refurbished from Ebay for much cheaper than retail, so that might be an option?
What I want to know is how on earth do you have a newborn and still look so put together and gorgeous! My only child is my corgi and I most days I can barely get put together 😂 In all honesty, you're not useless. You're an amazing and loving mother giving all you can. There are fully able bodied parents with no health issues who do a tenth of what you do. Make the adjustments you need and give yourself kindness and grace in this journey.
The only “right” way to parent is doing what works for your family. I know plenty of parents and their parenting styles are all different. They all are lovely people with lovely children.
It sounds like you have a good routine for your family. I’m a disabled mom with chronic pain, my partner and I also split the sleep schedule - i woke for the night issues and he got up early so i could sleep in. I know other mums who keep a chart of nappy changes, feeds etc so they don’t forget anything and makes it easier to identify changes in the baby’s day (eg illness). All children are the most beautiful ever born, I’m sure Rupert is stunning. It is a loving gift to keep his face private
I don't know of any creators specifically, however, maternally inherited diseases such as mitochondrial disease may be a good search element to add. All children of a birthing parent with mito will also have mito so it's an interesting dynamic. A lot of times mothers get diagnosed when their children get diagnosed.
Hello, I don’t know if anyone has already said this but Sophie Walker on the podcast Australian Birth Stories has some episodes with mothers who have disabilities - you might be interested in epsiode 58 with Sarah Hocking, or episode 287 with Ebony, there are more but those two come to mind. The podcast in general may be really interesting to you or some of your followers! They are not transcribed (yet) but she does post detailed notes with quotes from the interviewees which you can read. Have a lovely day, Siena
Seeing you handle all of this really helps me figure out how to deal with stuff so thank you! I have a host of random issues that I have to wait to get diagnosed and there's such a barrier to information on how to do things when you can't always do everything. It's my niece, not my baby so most parenting groups in the city wouldn't let me in, and if they would they're always so heavily gendered and have this weird vibe that I'm not a fan of so having content from someone I've watched for ages and really look up to as both a wonderful person and an absolute style icon is so helpful.
I'm sorry you had that experience. I can understand being exiled from other adults with children because you aren't what they consider to be "perfect" for their obviously claustrophobic group.
Thank you, Jessica. As a Deaf and disabled lesbian (we have so much in common including diagnoses so your videos are so comforting!), this video gave me such hope and calm.
Idk if the brainstorming for that situation’s done and dusted but having an upstairs and downstairs vacuum might be something to consider, mby the same for any other particularly heavy thing.
Firstly, you have a perfect nose and it fits you face very well. I am sure that Claudia would agree. Second, Congratulations on winning your award! It was well deserved. I LOVE Rupert's name. It's lovely! Well before he was born you could see the love and excitement you had for him. You may have some disabilities, but he will see how much you love him and what you do for him as his mother. Raising a baby is quite a job and the most important job a parent will have. Rupert will never have to worry about not getting enough love because I see how much you both adore him and want the very best for him.
Get a Roomba! It's so great, and the newer models aren't as noisy as they used to be. One less "house job" that needs to be done. Also, you and Claudia are wonderful parents, just as expected! ♥
Oh my god, deafness and parenting! I'm in fact only 50% deaf and it's all located on one side (i.e. I have one 100% ear and one 0% ear) which is a bloody parenting SUPERPOWER. Screaming child and/or too much anxiety/sleepiness/impatience to deal with noise? Just use one hand to cover the good ear and Do Stuff(tm) with the other hand! Or roll over in bed, mash the good ear into a pillow and get appropriate scream muffling so that you can still hear Child but your head won't split. Also, since mono-hearing means I have no ability to tell the direction a sound comes from, it took me about six months to learn exactly how every separate door in our flat and all the larger furniture, drawers with different content, window hatches, etc, sound when ... operated or attacked or fallen onto by Child, so as to be able to mama-teleport in the right direction while or before drama ensues. It's frustrating when we're at the park or something and I have to spin around and use my eyes or ask bystanders for help, of course, but as long as I keep my eyes on Child (which one probably should anyway in public places, I've heard) it's fine.
I am a disabled parent who is also parenting a disabled child, and now also a widow. But I wasn't diagnosed with my fibromyalgia until he was nearly 4, and noone has ever officially diagnosed me as on the spectrum. Before that I thought my only issues were endometriosis, anxiety and depression. Which is not without challenges but the fatigue and pain got very very much worse after having him, which I know now large hormonal changes can trigger worsening of fibromyalgia. Before diagnosis I put my back out 4 times in his first year, was extremely exhausted and was told all new parents are like that. Then it was blamed on him being a toddler, then being autistic. I have learned in the past 16 years that kids don't really care if you can't do everything like "normal"parents. My son is used to picking things up off the floor for me, as a little kid he loved playing on the bed with me or floor time. He understands when I can't be touched right now or if I need to rest. Granted him being autistic helped because he also gets touched out and likes to be alone. I frequently still feel like I am failing and feel useless, I don't think those thoughts go away, the worries just change as they age. But I'm honest with my son and he understands.
So many of the ways you accommodate yourself are so perfect for Rupert - I love hearing you talk about parenting him, it’s so clear that he must feel so seen and treasured
I have probably commented this on your videos before but it rings truer now that you have a precious little one. Please wear glasses with impact-resistant lenses full time to protect your good eye. Your baby loves your face and he has the potential to grab at your face and that puts the eyes at risk. Yep, he will grab at your glasses too, but having them there to protect the one good eye you have is super important!!
I was diagnosed with a disease called Cushing's when my son was 6.5 years old. It was due to a tumor in my pituitary gland and I lost the entire gland due to the tumor and brain surgery. I share alot of physical symptoms with people in the EDS community. I miss having a baby in the house. They're so easy. As long as they're fed, clean, and given lots of love and attention they're happy. I felt happy and fulfilled. My son is 16 now and I feel less happy and fulfilled. My days are spent feeling guilty because I feel so bad most of the time. I cannot do the things that I used to and we eat way too much fast food. On good days I function on 12 hours of sleep and a 2 to 3 hour nap. On bad days he may never see me awake at all. That's where the fast food comes in. I used to be a supermom. I'm still a good mom but I used to be so much better. I have an incredibly close relationship with my son which we may not have had if I were still healthy so that's a good thing. There's lots of negatives to being a chronically ill mom but just as many positives. I don't have a partner to share duties with, I think life would be much easier if I did but it is what it is. When he gets older you can spend bad days cuddling. My son and I spent lots of days doing picnics and movies in my bed. Played board games and whatnot. These days it's a no for him lol. There isn't alot of support out there for chronically ill parents unless you have an expiration date stamped on your forehead. Hopefully one day that will change.
The dark trim on a light outfit is genius! 😯 So glad the motherhood is going good and you have so many things to help you enjoy this time as much as possible. 🥰
I want to have children one day (a distant day since I am barely an adult) but I have so much fear as I am autistic and therefore am always tired and I react very badly to sleep deprivation and changes of routine. My doctor also suspect EDS as I suffer from unexplained chronic pain and other things that are related. So I feel my dream of having a child is incompatible with my conditions/probable disability (getting an appointment with a specialist to get a diagnostic takes sooo much time...). Yet, when I watch your vieos about parenting, I see it is possible and it fills me with hope and joy for the future.
As someone who is not disabled, I am always really impressed by parents with disabilities. Like how y'all figure out how to work with your disabilities and take care of your needs AND the needs of your child impresses the hell out of me. I sometimes struggle to take care of myself and my needs, but if you added a kid and disabilities/chronic illness in the mix?? Jessica says she sometimes feels useless but to me she seems like anything but. The amount of structure and organization she maintains in her life is very aspirational tbh. And I love how you and Claudia work together as a team, you guys are really doing an amazing job as moms (not that I expected any different!)
"Essentially, I tired myself out way too much and I should have been far more sensible and taken it a little easier." Pretty sure that's the same thing every mom learns after the first baby 😆 all I remember of the first month after my eldest is dropping things, arguing that I didn't need to sleep and I was fine, and waking up on the floor next to the living room baby swing he all but lived in until he started crawling at all hours of the day and night with no idea how I got there! 😂
My husband is newly disabled. From a devastating......"accident" 2 years ago. The day it happened our 3rd child was born. This has been HUGE adjustment for our family. And much of it is very challenging. But the love of our children pushes up to keep trying. Congratulations on your sweet little man. You're a beautiful warrior and despite the trials and tribulations, and your specific difficulties, motherhood is such a special journey. Love and light to you and your lovely family ❤
Please don't, you or anyone else with chronic pain, feel bad, guilty, ashamed, etc. about taking pain killers. There's nothing wrong with treating your pain when you need to with whatever you need to. We're not the ones that over prescribed and now are punishing those with chronic pain for the disaster caused by over prescribing. I hate how much that has stigmatized people with pain treating it like anyone else would treat an infection with an antibiotic. I'm more physically addicted to my antidepressant than I am my pain meds but people don't judge me for taking those. Sorry about the rant. I just don't want anyone to feel bad for getting by however they have to.
I agree that you shouldn’t feel bad about taking pain killers. I interpreted what she said differently- I thought she meant the amount of pain killers she was taking was unhealthy as in possibly dangerous amounts that could lead to overdose
I think you handle life with style,grace and humor. Being disabled just means you have to do things a little differently. The love you and your wife have for your son shines through. He is a lucky boy,indeed. New subscriber.☺️
I love you videos so much Jess. You are such a breath of fresh air. Just absolutely adorable. As someone with a non working body, that mom muscle is huge!! You are killing the mama thing. Im so happy for you and Claud
I've been a disabled parent for a year and a half now and expecting another child in August...I have to say it's a huge struggle, but once you're in the situation, you find a way to get your child what they need, no matter how horrible you feel. It's terrifying and amazing what we can do for our kids.
Whenever you're feeling down about yourself, remember that you've already accomplished more than most dream of. You may not seem like much in your own eyes, but you're a badass
My mother has chronic pain and migraines but was fully capable and present raising all four of her children. My mum tells me a story about how she always felt bad that she couldn’t run around and play with all of us and I, at around 4 or 5 turned to her and went “It’s ok, Daddies are for playing and Mummies are for loving” Not being able to do certain things doesn’t mean you are less of a parent, it just means you have strengths in different areas. It’s been beautiful following your journey and channel and seeing how much love you have for your boy ❤️
I was kinda surprised that having to sleep eight hours at night was a problem since that's the "norm," then I remembered... oh right, babies don't do that, lol. I sleep 11-13 hours (chronic fatigue as well -- recently been splitting it into 10-ish hours and a long nap, which is working better for my sleep schedule) so I don't think I could ever take care of an infant lmao
I normally absolutely need 9 hours but postpartum hormones are kinda fascinating and crazy, somehow I was ok waking up with my babies. When you are nursing it actually changes your sleep. Like you sleep lighter so you wake up with the baby easier. And somehow I wasn't much of a wreck. Now that my kids are older I'm back to absolutely needing a full night's sleep or I basically can't function. So weird.
There are ways for you to care for a baby. It probably means bringing someone in to help for the infant time. But if you really want a baby or if you find your partner has or is having a baby, there are ways to cope. Follow your dreams. (I am not saying this would be easy for starry-eyed dreams. But if you do want to expand your family, plan carefully and it may be able for you cope.)
Same. I knew I got over 9 hours of sleep every night because of my chronic fatigue (and yes, I need that), but ever since I'm tracking it with a smartwatch I've realized it actually averages closer to 10 hours a night.
I've quit jobs (and in some cases been fired) because management couldn't get "no, I need 8 hours of sleep to function, I am not going to work until 11pm and be back at 7am." Our culture uses sleep deprivation as a badge of honor. If you bragged about how much you could drink and still drive, people would think you were totally irresponsible, but driving tired / operating machinery (and let's not even talk about doctors who work 72 hour shifts and are making life and death decisions) is ok.
@@Morna777 Right?! Even though there's plenty of evidence that suggests sleep deprivation has a very similar level of cognitive impairment to being drunk!
Unrealted, but it's really nice to see that you guys are respecting Rupert's privacy and not posting his face online. I feel like not enough parents nowadays realize that that sort of thing can make a child super uncomfortable, especially if the photos are from really early in life when they had no idea that they were taken. My mom has a lot of old photos from when I was a girl on her public Facebook page and it makes me a bit sick to think about how, if someone just knows my mom's name, then they can see a huge chunk of my childhood (and also have me completely outed to them). Love what you guys are doing!
you seem like such an incredible mum! what you bring to the table as a parent is unique and will be so so treasured by Rupert and of course Claudia as well. Which of course you know. But still worth saying!
When I was a baby and my sister a toddler, my mom called my grandma, panicking, because my sister's bowel movements were "bright green." My grandma asked what she'd been eating and my mom said "cookies." Grandma then asked "who made them" and my mom said my dad did. My grandma, knowing her son, said "It's just from the food coloring, she's fine." (My dad LOVES to use food coloring). Everytime I hear new parents talking about their experiences, I think of that story and the one where my parents credit my sister for my safety when I was on the changing table. They kept forgetting to hold her on there when they turned to get a diaper or whatever and she'd roll off...when I came along, they had learned! 😂
My mom did the same thing when my son (who is turning 30 this month) was about 18 months old. My sister was visiting with her family and her younger son had issues with his G I tract. He has XXYY and it was common for him to have some bleeding which was obvious during diaper changes because his stool would be very dark. My mother was helping my son use the potty chair and thought he was having issues but he'd been eating Oreo cookies and that was turning his poo almost black LoL
As someone who often has dulled senses (ADHD and dissociation are a stunning combo) I’m a big believer in our body’s ability to judge proximity, especially based on patterns, for me it totally makes sense you’d be able be alerted to Claudia being away from the bed longer than usual due to that lack of proximity. I get it a lot as my partner has insomnia and when it’s bad his sleep schedule is less than continuous, he are definitely not sleep cuddles but he always jokes if he’s gone for more than 30 minutes I’ll realise and either come find him or ask about it in the morning.
Advice from a cleaning lady: get another vacuum cleaner for upstairs. In fact, get a second set of all you need to clean for upstairs. When I started work in a 3 story house with no lift I only had one vacuum cleaner. It's not only the effort of taking your vacuum cleaner up and down the stairs, it's that it's dangerous! There's a tube and a cord, you can get tripped up and fall! I told my boss that and I got full equipment in each floor. No falls have been had and my back thanks me. Honestly, even if you don't have storage space and it's a bit ugly having that stuff (must have a safe spot for those detergents, though! little kids have big bad ideas!) our health is worth more than aesthetics. Much love! ❤
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*Captions are being made, thank you for your patience!*
Thank you :)
Hi Jessica! 👋
Can I ask who does your captions or how? I've been trying to stop acting like I can fake my way through all audio all the time but most TH-cam videos I see have either really weird captions that don't seem to be actual language, or are just the machine guesses. I know TH-cam's caption policy changed, though.
The way you say you can paralyze certain parts of your body, it kinda sounded like you were listing that as a superpower. Bold claim! ;)
The caption interpretation of your little song before the memory loss segment made me laugh more than it probably should have....
I feel like in the disabled community our identities are almost stolen by certain parents. for example, a lot of mothers of autistic children call themselves 'autism mums'. Like, no, surely I'm the Autism mum, and as actually autistic mum! haha! googling 'how to cope as an autistic parent' brings up very different advice than I might like.
100% !! Let’s reclaim!
I can relate to that as an ADHD woman. I'm not a mom yet, but looking up coping mechanisms for me often pulls up "coping mechanisms for your child" which is a bit annoying.
I've noticed that with parents of autistic kids, I can imagine how maddening that must feel! As an adoptee, I have a similar issue finding resources for adoptees/by adoptees. So much is about adoptive parents (and/or the algorithms are set up with that bias) and it's difficult to wade through to find what I actually need. Solidarity.
@@demolitionwoman_OFMD That's true about the focus of the adoption experience is usually focused on the adoptive parents not the adoptee and the parents often fight to keep the narrative at all costs imo
not a parent but its truly irritating when you look up adult adhd related things and its all just about parents of adhd kids... like :/ what about us as ADULTS... its almost like they’ve infantilized neurodiverse folk and just assume adults don’t have problems anymore or something... its just weird
I just want to say re: your split schedules is a brilliant idea, I have friends who did that with their baby because they found it worked best. You should give yourself more credit, you and Claudia doing this as a team, you are the furthest thing from useless, Jessica!
because even if u not doing something physical u are there in mind and love they both know it
@@missz9241 This ⬆️ Priceless 💚
Wanted to add that this is what me and my husband did too. Worked way better than taking turns because your sleep isn't constantly being interrupted.
Yep, we are a co parent team too! Almost 7 years now, it’s given us all time together through so much that I’m forever grateful for and she’s had so much time with both of us
I agree, it really sounds like you've got it, taking turns in a way that works for both of you.
Split shifts with a newborn should not be controversial. It makes so much sense. Hubby and I did it too because he works a very physical job so needs his sleep.
This strange idea some people have that both parents have to get up every 3 hours and everyone be exhausted is absurd.
It's also very logical and efficient. People are just grasping at traditions for the sake of it.
Yep. I did "night shift" and Daddy took over at 6am so I could get a couple hours uninterrupted sleep. He's of no use to me when he's tired and grumpy! I think *most* parent-couples I know ended up doing something similar with one parent doing night shift (whichever one that was best able to fall back asleep) and the other doing daytime so the night parent could sleep.
My husband works shifts that rotate every 2 days. We had a schedule that worked around whatever shift he worked that day and his off days. Do what works for your family and make sure everyone gets some sleep.
yeah, it's just a problem when one person does all the work and the other does nothing even though they can and just don't want to.
Yea that's crazy talk. I watched this video of a woman and her male partner sleeping with their toddler and the toddler would wake her up all night to breastfeed and the man kept sleeping through it and everyone in the comments was dragging him saying "what does he even do?!" And calling him useless and lazy, but what if she's a stay at home mother and he has to wake up at 5am to work a 12 hour shift in order to allow her to be able to raise their child without putting it in a daycare to be raised by them while she also works outside the home...people choose to have different roles in some partnerships. Everyone is still equally important.
Forgetting diapers is totally normal. Being a parent doesn’t come with instructions. Judging by the twinkle in your eye as you speak about your baby boy, you’re doing an amazing job
Absolutely! I'm a neurodivergent parent with spectacularly terrible executive function married to a neurotypical for whom responsibility is practically his middle name. You want to know who is more likely to forget to pack diapers/wipes/spare clothes/toys/snacks/etc for a solo outing? 100% him. Anyone can forget to check the bag (actually he usually just straight up forgets the bag). Anyone.
@@lindaleriel “he straight up forgets the bag” 😹😹😹😹 it happens!!! I don’t have children, but I have raised enough nieces and nephews to know the “parenting” struggles
I often used to think I made more mistakes than non disabled parents, then I discovered that wasn’t the case. It was a revelation, took a while to realise we all just do the same things as parents, just in different ways
11:49 I didn't realize I had a word until my therapist pointed it out. "Burden" is the word that upsets me. Its not a word I've heard often, but its definitely the one that makes my stomach sink.
It's my word as well. Nothing else gets to me like that word
People are so quick to use it without knowing anything of our actual disabilities or how they affect us or anything of the rest of our lives! It's helpful to trace it's history and know that it comes from medical parlance about the financial 'burden' of illness on society which is in itself an underpinning notion of eugenics. We are part of society and it's insulting to compare us to criminals or highway upkeep which is what this effectively does. Lots of people make people's lives intolerable - ''maybe we should be weeding out the gene for politicians and tax evaders?'' (Francesca Martinez) As an example ' It's an insult to my lovely Mum in law for example noone but a monster would think caring for her was any such thing - she died of MND but it was her life mattered - she was such a person! Now by contrast her daughter, my sister in law made our lives a misery because she was toxic and abusive, and her husband and kids became ill from the stress (I lived near them and it nearly killed me!) Her husband and one of her kids actually escaped her by dying . She had money, health and wealth and she was evil. Maybe we need to reclaim the word the way 'queer' has been? Not easy but when I think of all the toxic folk out there why should we have this label?
Mine's "Lazy". I'm 31, and only recently have I felt comfortable with slowly reclaiming it in non-judgemental phrases like "I had a lazy Saturday morning just relaxing in bed with my cats".
Mine is 'desperate'
Kindred spirits. Lazy is mine too, but burden also hits hard. Also dramatic.
The kitchen sink is perfectly fine for bathing babies and it will save you hours of back pain.... something I wished I'd figured out months earlier. It's especially convenient if you have a little sprayer hose thing with your sink that you can use for rinsing.
My parents used to bathe me on the sink or on a table in a special bathtub she had for... Idk how long. It was useful for her but it was also useful for my grandparents, since the first few months we lived with them.
I washed my daughter in the kitchen sink too a few times. It helped save my back.
Absolutely 🤗
My parents literally replaced our split kitchen sink with a farmhouse sink specifically for bathing my younger siblings. It’s just too easy to plop a kid in there after a meal and hose them down to not do it.
Yeah let's be honest I wished I'd figured that out a whole kid earlier. Sitting on a high backed stool at the sink when I hurt too bad to stand was a lifesaver. With my oldest I used to get in the tub with her sometimes. I'd put just a few inches of water in and lay her on my thighs with her head at my knees and wash her that way. Ideally I'd hand her off to my husband and then continue to bathe myself or I'd have a hooded towel laid out on the floor to wrap her in for a few moments while I dried myself off. It's still a really nice bonding skin to skin experience I think, but way more of a hassle than the kitchen sink.
Jessica, I’m so sorry you felt excluded from the ante-natal group. I know this goes without saying, but I’ll say it anyway: you’re just as much a mother as anyone who has given birth-more than many. And you’re extremely useful, both to your little family and to a much larger group, as your recent award has shown. I know you must feel some grief about not having been able to carry a baby yourself, but who carried him will not matter to Rupert. Who loves and understands him is what will matter, which clearly you and Claudia are both doing amazingly. 🎀💖🎀
she is a Mum where it counts ! She's present, works, cares, nurtures, makes plans/decisions and LOVES Rupert beyond measure !! It's about love ! And Jessica and Claudia both have that in huge amounts !! yay
So well said!
@@emmynoether9540 yes I couldn’t agree with you more. I’m not very good with words. But if I was that’s exactly what I would have said🤣
Considering you live in the Brighton area I'm really surprised you would get this kind of reaction from people. I hope they learn to be more compassionate and accepting.
you said this perfectly!
The idea of Claude doing all of the typical “man of the house” chores while heavily pregnant was the feminist humor I didn’t know I needed😂😂
Lol 100% me
Momming with Migraine is a really good and informative channel about a woman with POTS and chronic complex migraines (and potentially a CSF leak) and she's currently pregnant with baby #2. She is a very small and recent content creator who doesn't get nearly the attention she deserves.
She’s fantastic, good recommendation.
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Great suggestion! 💗
I love her!
"My own insecurities: I'm allowed to have them, but I should definitely deal with them."
This will become my new daily mantra. ❤️
Same! Beautifully put.
Not sure if you have mentioned or met "Stump kitchen" before, but she is a mum with a limb difference! I think her baby is a few months under a year old, and she has made quite a few videos about being a mum with only one hand, both before and after having her baby. She has talked about her own experiences as a parent (and her worries prior to giving birth), and she has talked with other parents with limb differences about their experiences.
Also check out Paralyzed Living on TH-cam, his back catalogue includes videos on how he cared for his daughter when she was a baby. I don’t know if his tips will work for you but I wanted to shout him out!
Thank you for sharing. I will definitely try and find her page. The prospect being a disabled parent is incredibly overwhelming
There's also a lady on TH-cam called Wheelsnoheels who has a family and lives her life with a spinal injury.
I became disabled when my daughter was 3, and she is now 13. The areas that are difficult have changed as she changes. She is a HUGE help now, but I dislike putting too much pressure on her. I think children with a disabled parent learns compassion and willingness to help in a special way. But I’m cognizant that it can be hard. And even embarrassing at times for her.
It can be so intimidating to know that the lone with "stolen childhood" with these things can be so blurred and easy to reach
Lynn2574 · Having anyone in your family with a disability, can help children become a much more compassionate and caring person. She probably is embarrassed of you but not because of your disability, but because she's 13 and you're her mom. When I was 13 there wasn't any girl who wasn't embarrassed of their mom. Hang N there before you know it she'll be passed this stage.
@@QueentDB I am sure you are right. I just got a new tattoo a couple weeks ago, and apparently THAT makes me cool. For the moment.
I became disabled when my kid was five. I’m kinda glad they were older- at that point where I no longer needed to carry them for anything, because that became completely out of the question.
I think something that a lot of disabled parents don’t talk about is the guilt. That you’re not parenting your kid/s the way abled parents do, that your kid/s had to grow up a bit quicker, be more independent, help you out more. There’s a lot of guilt that comes with that.
I am so thankful when my youngest entered college my MS keeps me using an assistive device. When he was younger I could still walk and work. He doesn't complain as much as me. I'm frustrated with my lack of motor skills.
How has it gone this quickly already seems like yesterday since the pregnancy was announced I love the family and the content u make it’s honestly makes such a genuine change to see all the amazing content on disabilities and what it’s like to live like this in today’s society
I was going to say the same! It feels like only 3 months ago they announced claud’s expecting ☺️
That's how babies go, time flies haha
It is so validating to hear another parent say they are unable to function without sleep. That some people can't just push through the mental and physical consequences.
My partner has ADHD and the only way he remembers feeding our cats in a timely manner when I'm not around to do it is by them just screaming at them to remind him. Even he can't ignore two big and loud hungry Bengal cats. They have a very accurate inner clock too so at around 6pm they start reminding him of his existence.
We don't want kids but we both know we both would struggle for different reasons with keeping up with a child. I know I can handle it because I was my nephew and oldest nieces sole caretaker for two weeks each month when I was a teenager but I also know I never want to experience that kind of stress again.
That adhd parenting freaks me out
I don't like it when you call yourself useless. 😥 Its the internalized ableism, I know it well, and have the same thoughts about myself. People don't exist to be "of use." Just needed to say that. 💖
Thank you. I needed to hear this today.
I made a complaint to my vicar once about a sermon by someone else talking about how his granddaughter had been "useless" and that after she died he realised her bright attitude had made people smile and that made her "useful". Obviously a hugely brief summary, but he said the word "useless" over and over and over. I still shudder when I remember it.
😔
OMG your sixth sense for Claudia and Rupert being in trouble is amazing! It's like Miss Clavel from Madeline waking up in the middle of the night saying "Something is not right!"
oof that "one word that sets you off" thing is so true. Mine's "lazy". Living with ADHD and depression and now chronic fatigue syndrome I have a lot of unwilling "lazy" time where I'm recovering or getting stimulated after doing something boring and abled neurotypicals *really* have a problem with you not filling every moment of your day with "useful" activities.
Mine is "sensitive" (anxiety, ptsd, and likely an undiagnosed autism spectrum disorder). I've come to see it as a strength over time, but it still stings hearing internalized past voices call me "too sensitive". Sending you lots of love and hope you're able to get in ample rest and self-care
Ugh I get this my adhd makes me seem lazy but I promise I'm just recovering from writing a law essay 😭😭
Samee
Yessss. I hate that word so much. To call my behavior lazy assumes bad intent. Pacing myself so I don't collapse into a ball of misery is not the same as laziness.
I just posted on my FB that if anyone uses the word “lazy” around me they are acknowledging they are ok with me slapping the crap out of them. ☺️
As someone with a baby and a partner who has a job that has to be done in person, you have no idea how USEFUL it must be to have a co-parent who is able to work from home the whole time, be around for nappy changes, or just to hold them for a second if they're a bit sad but you really really need the loo. I miss my coparent so much in those moments and you must be so helpful to C in them!
yes anything Jessica and other disabled parents do within their own ability to coparent is valuable and instrumental and i'm sure the other parent values it immensely
As a fellow person with EDS and vacuuming...I ended up having two. One downstairs, one up stairs. I think it's a learning curve with all new parents. What works for you & family...works. From what I've heard/learned is the second child is slightly easier as you learned what works and what doesn't. You have a beautiful family. Wishing you, Claudia, and Rupert health and happiness 😊.
Highly recommend this if you have the means and the storage space! It means you don't have to carry a vacuum cleaner up and down the stairs, *and* you have a spare if one breaks.
We also have this! Two vaccums! We did get a super light big vaccum so it is possible to take upstairs, but having the second one is so useful. Means vaccuming can happen even on bad days
Such a good idea.
@@caitlinquinn79, my upstairs vacuum is lightweight. My original (& downstairs vacuum) is heavy, lost my grip too many times after I moved to a two-story trying to transport. Thus, 2nd vacuum.
I put my hips/back out that many times after I moved, I said ‘f it’ and bought a robot vacuum. Best thing ever for me lol.
This feels so heartwarming. The idea that it's hard to explain that you are a TH-camr then you're a disabled, deaf mom is actually hilarious to me. Sometimes I forget there are people out there that are entirely ignorant of TH-cam and TH-cam culture...
LOL I never thought I'd find baby content so relatable, but your face when you said "...I'M the capable one?!" was 100% me moving in with my partners and realizing that of the three of us I usually have the most spoons, which is NOT VERY MANY.
So disabled housekeeping tips! Do everything on the same floor at a time. Have a basket or bag to put everything in that doesn’t belong on that floor into. This is great for those of us who can’t do stairs much and for adhd stuff! And I can push it along the floor until it’s time to go up and down stairs.
Also, invest in the lighter weight vacuum. Not just for your sake but so the little one in a couple years can help out and learn how to sweep! It’s great for kids who respond well to Montessori at that age.
My child had to be held all the time unfortunately so we had to figure out which carriers didn’t put stress on my shoulder joints so I wouldn’t collapse in pain. My kiddo didn’t respond to Montessori until he could crawl and stuff. But he’s two now and responds to Montessori really well.
Great tips. I have ordered a new vacuum that you can carry over your shoulder. I'm looking forward for trying out.
Disabled housekeeping makes any tips so joyful to have.
What carrier did you use? I have fibromyalgia, and my shoulders are super sensitive to pressure. I've been really nervous about carrying, because they all seem to put so much strain on the shoulders.
@@rabbit__ as FMS mum of two… first bub, around home it was a tea trolley with pod seat strapped on, and second bub a taller trolley from the rehab unit! The trick was keeping baby close, high AND safe, while minimising weight bearing & lifting.
I didn’t have the arm strength to lift bulbs in and out of backpacks or even the simple front pouch, but if someone was around to set us up i could carry the bub ok for a while. Slings we’re out as I had to load my body evenly both sides, since a twist on our back & shoulders or one hip was agony.
@@westzed23 this cpuld be a whole video. I have ADHD , Autism , astma and a 13 month old son so I am exhasted most of the time.
@@monicaw3892 this would be great, but finding someone that would be able to make the videos of tips for the medically challenged. Between my own disabilities I know I couldn't right now. Perhaps there is some way that we each could do something.
As a disabled mom whose children are now grown, I recommend harnesses and leashes! They allow your small human to explore whilst still keeping them safe.
I’m legally blind and ADHD (and it’s likely I’ll pass on the ADHD part to any kids I make 😅) and the first time I saw a legally blind mom use a harness while out walking with her son was such a huge “Ah ha!” moment. I’m so glad to hear another mom with disabilities had a good experience with them!
I DID THAT WITH MY 2 SPROGS AND THERE WAS JUST SO MUCH HATE FROM THE ABLE BODIED MOTHERS AND I DIDN'T GIVE A FLYING HOOT. I ALWAYS RESPONDED WITH " BETTER HAVING MY KIDS LOOKING LIKE DOGS ON A LEASH THAN MY KIDS LOOKING DEAD ON A ROAD ". I MAKE NO APOLOGIES THEN AND I WILL MAKE NONE WHEN MY GRAND BABIES ARE ON THE GO.
@@debs2026 why are you screaming?
@@KMMHealy I got the idea from my mom who wasn’t disabled but used one with me so I could safely explore. She once had someone stop and harangue her on the street. She just stared at them until I tried to dart into the street and she went yoink! She said the woman stopped midsentence and shut up.
@@livelongandprospermary8796 my son was that way, his sister only slightly less so but she’d listen and he didn’t until we went through behavior mod classes and then got him on meds. They both have Childhood Onset Bipolar Disorder.
As someone who feels like parenthood is such a distant possibility (as currently my chronic migraines make it tricky enough just to look after myself!) you're an absolute star and inspiration that everything's possible. Thank you for all you do for the community ♥️
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Excuse my sticking my nose in your business 😜 but have you been checked for chiari malformation? I had awful unending migraines and just found out about it in February. Butterbur (the herb not the extract) has really helped reduce them too. Now the headaches only happen when I slip up and trigger them on accident and haven't lasted more than a day, usually just 3hrs.
@@aprildawnsunshine4326 no need to apologise, I appreciate the kind thought! But yeah... we're pretty sure it's brain damage from a past surgery and incurable. I'll still check it out though, thanks for the suggestion :)
I was just thinking this. I thought I would have lots of kids but then got sick and that became just something I would never do. But I just had surgery and feel so much better but still have way less energy than healthy people and will almost certainly never get better than this but seeing Jessica talk about being a disabled parent with chronic fatigue and chronic pain makes the possibility seem closer for me again. But I could never do it alone and I don't have a partner now so I don't know what will be.
(I have MG and chronic migraine, not sleeping is so the enemy)
Not to say you're wrong because I mostly agree but what I find extremely difficult to relate to in Jessica's videos is their level of wealth. It's no secret that more is possible with money but this aspect of life is somehow not really mentioned in the videos, let alone mentioned as a massive privilege.
I don't know about the UK but in my country significant disability is a predictor of economic impairment. Plus, being a youtuber is also a very niche and risky career.
Not to mention that Jessica is not a single parent and that there's marriage equality plus fertility treatment access in the UK. I wouldn't be surprised if a not so small fraction of global audience watched this channel with huge envy rather than with "yay, everything is possible" attitude. Think about countries with not fully socialised healthcare and so on.
I'd love to see a really in-depth video about all the (disability) aids, procedures, routines, strategies you use and can recommend to other (disabled) parents. You mentionend the bathing routine and I think things like that would be a great help to other parents and non-parents as well.
I think this is a great idea. Not putting more work on two Mums, but I would love to see how you handle each routine. Floor time and bed time might be shorter for you. Using your car seat and pram would be great. These baby aids sound wonderful. And then to add the critical part to hide Rupert's face.
Don't torture yourself if you can only do so much in your day. Pacing time has helped me but then that extra migraine comes on badly. 👩🏻🦲💗
Agreed. When my daughter as a baby 6 years ago we approached occupational therapy for help with aids to help me as the disabled parent to care for my daughter and were told there was nothing. So we adapted and worked out our own way. I was amazed and kind of disgusted that OT didn’t have any information available though.
Agreed! As a mom with hEDS and POTS, I’m really struggling to figure out strategies all on my own. I didn’t even know about 360 car seats until this video and I immediately went out and found one. Wow! What a back saver. Any other strategies or tools you’ve worked out would be so helpful. I’m really struggling to figure out how to get my baby up and down the stairs now that she’s 6 months+ and wiggly/throws her weight.
I have a question about Montessori: I'm really curious if there are parts of the Montessori method that you tried and found out were not a good fit for your family?
Or maybe any parts that you don't intend to practise in the future because they don't seem right for you?
As a Montessori parent, they opted for a crib. That’s not super traditional, as in the method it’s recommended to start with a floor bed, but the biggest thing about Montessori is that there isn’t a right or strict way to do it. It’s about respecting your child, fostering their independence, and following their lead.
@@angie_exe Bruh, didn't realize my parents' lack of resource to buy a crib for me and my sister growing up is Montessorian, lol.
@@cheesecakelasagna I mean, a bit different, but the spirit is there! Floor beds are recommended because children can get in and out with no assistance, and won’t get hurt if they roll out.
Alls I can say is that if you send your kid to a Montessori school, switch them by 3rd grade. I stayed until 8th grade and it was a mess, in my class of 12 half of us (self included) haven’t exactly thrived in life.
@@m4ryjan3 I worked in 20 month through 8th grade Montessori school. I agree that by end of 3rd grade, the benefits vary greatly based on the school and child.
I love how Jessica said "I grew it" so quietly proud about her mom-muscle. I'm the same way about my body lol.
I am not diagnosed with any disabilities, butt I can completely relate to your chronic fatigue + parenting woes. My husband has fibro and we have a child about 3 months older than Rupert. I discovered very quickly that attempting to operate on a newborn's schedule induced borderline narcolepsy in me after only about a day. We implemented a shift schedule where I got to sleep from 10-6ish and hubby slept from 6-noonish every day and it worked really well, especially as he started sleeping longer stretches at night. Hubby got the admittedly easier shift when he was mostly sleeping and I got a full night's sleep and was able to function during the day. Best decision ever.
Possible tip: I kept three diaper bags at times. One stayed in the car, one stayed with the stroller, and one was the one we used the most and 'tried' to bring everywhere. The car and stroller ones were small with just the basics (a couple of diapers, a change of clothes, wipes, and the car one had a bottle and formula since I had to bottle feed).
I would love a whole series on Montessori stuff, just like quakerism. So inspiring to watch
My grandmother was born deaf and learnt to lip read - she raised my hearing mother really well and took great care of me when my mum was working. She also ran a dairy farm with my grandfather. She didn’t let anything get in the way and I aim to be as marvellous as her when I become a mother!
My word is lazy. CFS, ADHD, 2 back surgeries, foot drop. Still worried about being seen as lazy
ALL parents make mistakes, each and every one, no matter what they say. Social media as you know is only the highlights of the day. Most people don't post about struggles, when they messed up, when they're kids don't behave, etc. Your baby boy is loved and cared for so deeply by his mothers. There is nothing more he needs. ❤️❤️
As a mom who couldn't breastfeed... I too felt so alone in that aspect of motherhood. But just remember we are amazing at being moms just as we are. Rupert is so lucky to have you as a mom. 😊
As someone who is able bodied but suffers with mental health stuff, and is in a long term loving relationship, and recently pretty desperate to have a baby, this is super reassuring to me. Just to see someone have fears, but go through it because of how much you want it and how much it means to you, well, that is everything to me!
Thank you so much for allowing us to join you and your family in these private, but beautiful moments 🤍
Mental health issues may cause executive dysfunction, which means we have a hard time on doing everything lol. It affects the ability to plan, start, continue, finish and exchange between chores and day to day activities. We desperately want to do things, but it's like our brain simply doesn't give the spark to start it, doesn't matter how much you want, it's like we are stuck to the sofa or bed, and it may be hard even go get up and eat or use the bathroom. It is also an issue to neurodivergent people such as autistic and ADHD, and if you are/have both... Well, good luck! It's awful, we have good and bad days, and as most people don't know about this they will get even worse because they feel useless, but the are not!! We are dealing with something really hard and not fixable with medicine or surgery, so we gotta be gentle to ourselves and live one day at a time 💛
Why are you desperate to have a baby?
@@analuisa1214 Be gentle to ourselves and live one day at a time! YES! I agree. Having been through years and years in therapy, been twice in a mental health facility, different medications and courses on different aspects of my specific mental health issues I’ve learned to prioritise what is and isn’t actually that important to me, how to accept what I can’t change, like my ability to do some things, and that mental health is like a staircase and we walk up one step at a time. I wish you all the best in your journey, because if I can come this far you certainly can!!
@@nycdyke2867 It’s a complex answer, so I’m afraid my reply will be long, but to me it would mean continuing what my partner and I have together. I never ever thought I could find love like this, since I struggle with mental health and come from a very unhealthy childhood and family. I’ve sorted some of that out by choosing to part ways with my mother, and most of that family, so I have lived alone since age 15, and as I am a dual citizen my father and that side of the family, live far away, in another country, yet I have such a nurturing and great relationship with them all. To be able to open my heart to be nurturing and loving is something I never thought I would be able to do, without being severely hurt and punished by whatever power the universe has. But here we are, the two of us, in a health and happy relationship, after eight years, and I want to share more of life, and love, with my partner and the family I have chosen for myself.
Here it is totally normal to have kids on a leash
So they don't get kidnapped ...
I've found that explaining things to people using the "spoon theory" really helps them understand,for the most part. What they don't get is that you don't necessarily get the same number of "spoons"each day and that you don't know how many you're going to get until you run out of them. But it helps them to be it somewhat, which is sometimes the best you can hope for.
I personally like the phone battery analogy. I just start the day with max 60% of what most people get *and* it drains much faster than it should, like an old phone.
I think the split shifts sleep schedule makes INFINITELY more sense than like taking turns or something which has always seemed wild to me
The sleep thing hit me really hard. I was diagnosed with epilepsy a year and a half ago and one of my main triggers is sleep deprivation. Before the diagnosis I was always the person to power through a night, staying up super late either partying or studying. It was really hard to "unlearn" that behaviour but seeing as I am "useless" (as you put it) for at least a whole day after my seizures it is a price I am willing to pay.
I still dread the post-seizure confusion and the terrible pain of almost biting the tip of your tongue off...
@@jackoh991 i don't have children yet seeing as I'm only 20 but I'm on medication that keep me seizure free... still the anxiety of having a seizure remains and I try to get at least 4 to 5 hours of sleep in every night... i think i could also do that when I have children in the future
I want to send your videos to my occupational therapy professors as updated source material for adaptive parenting.
Understanding what adaptations and considerations are relevant and useful for parents today is so important to teach new occupational therapists about before they practice.
What a fantastic thought!
How sad that the professors don't stay current.
@@HelennaRose the educational materials are all very up to date thankfully, my department is deeply involved in disseminating current literature.
Just the videos showing the lived experience and what it actually looks like to access adaptive tools and strategies for parenting these days are older. For visual/kinesthetic learners like me it's much easier to get a jump on understanding how to help someone access adaptive parenting tools if I see something like this rather than reading a textbook.
There have *always* been mothers who did not give birth to their children. It’s not only same sex couples. Adoptive moms, foster moms, trans moms, moms who used a surrogate-not to mention stay at home dads. If your moms group doesn’t feel welcoming to people who’ve had different journeys to parenthood, you should think about whether that’s mainly in your own mind. And if it’s not, you should think about whether these are the people you really want to be friends with.
Also, don't feel obligated to stay with them just to be polite and not hurt feelings at the expense of your own mental health.
Cole and Charisma, from the yt channel Roll with Cole and Charisma, are an interabled couple trying to conceive and preparing to become parents. I imagine a collab with them would be interesting and nice
I cried like 3 times during this video because I just never ever thought I could have a child of my own because of my mental health problems but looking at you doing all these different things witha glow on your face because you love your baby so much and that's literally the only thing that matters for a child (that you love them and try your best) and idk that was just really emotional for me. Love you! ❤️
As a disabled woman who very, very, very much wants to be a mother, you have a way of reassuring us that it is possible, just by sharing your own experiences, and I thank you and Claudia from the bottom of our hopeful hearts. 💜✨💕
I'm a chronically ill/disabled mom. I talk about it on my platform sometimes (though it's not the direct focus). I have chronic migraines, which can also cause chronic fatigue and some other unfun things. If you ever want to discuss some parenting things, I am open to it.
Keeping up with kids when you're fatigued isn't easy, but I will say that having been open with my kids about it has helped as they get older. They're very empathetic about it and even when they're disappointed because we had to change plans, they understand.
I know that's not useful NOW. I just hope it helps reassure that it'll be okay.
My damaged to my core word is also useless. Just hearing you talk about that made me tear up.
Hi Samantha! I have been a chronic migraineur since the age of eleven, eventually having them every day. The year my daughter was born migraines weren't the only health issue that I had but were some of the worst. Thankfully that was the same year that sumatriptan (sold under the name "Imigran") was approved & it was a game-changer for many years. I lived in S. California at the time, full-time & was immediately given the drug in tablet form, much later I administered it as an injection. It is NOT an opiate, nor does it contain anything to make one drowsy. Instead, it's a vasoconstrictor, getting at the root of the cause for most migraines. Sadly I've discovered that a lot of patients in the U.K. & elsewhere haven't even been told about the drug. To go from the misery of a migraine to almost "normal" within 20 minutes is almost miraculous. I do hope that this helps!!
@@CartePostale. Thanks for the heads up. I live in TN which has 4 of the top 10 worst cities to live in for migraines in the USA. (I'm so lucky. XD) I've tried a lot of different meds, but my migraines have multiple sources. The Emgality shot works the best, just fighting with insurance to cover it atm.
@@jackoh991 Tbh, I didn't sleep much. When I did sleep, was because my husband took over for me. Or if he was working 12s all week, my sister would come over for a couple hours so I could sleep.
I didn't know I had migraines until my kids were toddlers because my big symptoms are not the pain and I don't get light auras. So when they were babies, I largely suffered through it.
I had a very similar experience (although I was the birth parent and the one with the disability) and I also wore myself out. Took a while to figure out the right balance. My trigger word is "lazy", so I probably pushed myself too hard to avoid feeling like I wasn't doing enough.
Idk if anyone has mentioned this but Living Well with Schizophrenia just put out some videos about being mentally ill and disabled with a new born, as well as older children. That could be helpful for the mental aspect of parenting!
Huge fan of them! Can recommend. They also co-parent their older kids with a queer couple. Can also recommend Multiplicity and Me, they’re a DID system and recently have done a few videos on their pregnancy and parenting journey.
I also have EDS, and how you talked about sleep just made my own body make SO much more sense to me. "I don't have reserves" is the PERFECT descriptor. I'm gonna use this to talk to my boyfriend about sleep.
Nina Tame is an wonderful disabled parent! She's got lovely colorful hair and a lot of amazing content!
Ill check her out thanks!
Me, in a lesbian relationship with no want for children: ah yes the electric buggy
The unconditional love and understanding is so heartwarming to see. Logistics problems can be solved with teamwork and if required, hired help, but the warmth and love can are priceless
I never thought about the "will this device/item work for both of us" concern until my marriage. My husband and I have a few disabilities, but he's incapacitated more often than I am. This is part of why we have a litter robot for our cats now; it's much easier for me to clean and empty than a traditional box was! I'm glad you're normalizing these conversations between partners, whether a child is involved or not!
16:32 That's such a good Claudia impression. Definitely felt her spirit for a second, haha.
Also, that parental spidey-sense is so true, and it doesn't even have to be a human you're parenting on to develop it.
As someone who’s had chronic pain for 22 years from a spinal injury I’m amazed that you’re able to sleep for 8 hours a night! That’s such a blessing!! I average around 2-3 hours a night, and 4 on a really good night. At least once a week I’ll have a night where I don’t sleep at all, which is about as fun as it sounds when you’re in excruciating pain and the one thing that would help, ie sleep, is the one thing you can’t get!!
So pleased to hear how well you’ve coped with being a disabled 1st time Mum. Unfortunately that was something I wasn’t able to do but I’m a very involved godmother, which is great.
Having left baby parenting 50 years in the past I say ya' ll are doing just fine. Working it out as you go.
When Jessica says she developed muscle and then up pops an impressive bicep :O
You are so gosh darn amazing Jessica!!!!!
You've probably been recommended this a million times, but the Dyson cordless vacuum is such a lifesaver. It's sometimes a pain to have to charge it and it is the most expensive vacuum I've ever seen that doesn't do the damn thing itself, but having worked in childcare at a few homes including one with a disabled parent, I can confirm it makes everything so much easier. It's much lighter, you can take it up and down stairs with no fuss, and it's super quick to clean up any accidents that befall young children, especially as they start crawling. Big investment but one family I worked for got theirs refurbished from Ebay for much cheaper than retail, so that might be an option?
What I want to know is how on earth do you have a newborn and still look so put together and gorgeous! My only child is my corgi and I most days I can barely get put together 😂
In all honesty, you're not useless. You're an amazing and loving mother giving all you can. There are fully able bodied parents with no health issues who do a tenth of what you do. Make the adjustments you need and give yourself kindness and grace in this journey.
The only “right” way to parent is doing what works for your family. I know plenty of parents and their parenting styles are all different. They all are lovely people with lovely children.
It sounds like you have a good routine for your family. I’m a disabled mom with chronic pain, my partner and I also split the sleep schedule - i woke for the night issues and he got up early so i could sleep in. I know other mums who keep a chart of nappy changes, feeds etc so they don’t forget anything and makes it easier to identify changes in the baby’s day (eg illness).
All children are the most beautiful ever born, I’m sure Rupert is stunning. It is a loving gift to keep his face private
I don't know of any creators specifically, however, maternally inherited diseases such as mitochondrial disease may be a good search element to add. All children of a birthing parent with mito will also have mito so it's an interesting dynamic. A lot of times mothers get diagnosed when their children get diagnosed.
Hello,
I don’t know if anyone has already said this but Sophie Walker on the podcast Australian Birth Stories has some episodes with mothers who have disabilities - you might be interested in epsiode 58 with Sarah Hocking, or episode 287 with Ebony, there are more but those two come to mind. The podcast in general may be really interesting to you or some of your followers!
They are not transcribed (yet) but she does post detailed notes with quotes from the interviewees which you can read.
Have a lovely day,
Siena
Seeing you handle all of this really helps me figure out how to deal with stuff so thank you! I have a host of random issues that I have to wait to get diagnosed and there's such a barrier to information on how to do things when you can't always do everything. It's my niece, not my baby so most parenting groups in the city wouldn't let me in, and if they would they're always so heavily gendered and have this weird vibe that I'm not a fan of so having content from someone I've watched for ages and really look up to as both a wonderful person and an absolute style icon is so helpful.
I'm sorry you had that experience. I can understand being exiled from other adults with children because you aren't what they consider to be "perfect" for their obviously claustrophobic group.
Thank you, Jessica. As a Deaf and disabled lesbian (we have so much in common including diagnoses so your videos are so comforting!), this video gave me such hope and calm.
Idk if the brainstorming for that situation’s done and dusted but having an upstairs and downstairs vacuum might be something to consider, mby the same for any other particularly heavy thing.
Firstly, you have a perfect nose and it fits you face very well. I am sure that Claudia would agree. Second, Congratulations on winning your award! It was well deserved. I LOVE Rupert's name. It's lovely! Well before he was born you could see the love and excitement you had for him. You may have some disabilities, but he will see how much you love him and what you do for him as his mother. Raising a baby is quite a job and the most important job a parent will have. Rupert will never have to worry about not getting enough love because I see how much you both adore him and want the very best for him.
Get a Roomba! It's so great, and the newer models aren't as noisy as they used to be. One less "house job" that needs to be done. Also, you and Claudia are wonderful parents, just as expected! ♥
Oh my god, deafness and parenting!
I'm in fact only 50% deaf and it's all located on one side (i.e. I have one 100% ear and one 0% ear) which is a bloody parenting SUPERPOWER. Screaming child and/or too much anxiety/sleepiness/impatience to deal with noise? Just use one hand to cover the good ear and Do Stuff(tm) with the other hand! Or roll over in bed, mash the good ear into a pillow and get appropriate scream muffling so that you can still hear Child but your head won't split. Also, since mono-hearing means I have no ability to tell the direction a sound comes from, it took me about six months to learn exactly how every separate door in our flat and all the larger furniture, drawers with different content, window hatches, etc, sound when ... operated or attacked or fallen onto by Child, so as to be able to mama-teleport in the right direction while or before drama ensues. It's frustrating when we're at the park or something and I have to spin around and use my eyes or ask bystanders for help, of course, but as long as I keep my eyes on Child (which one probably should anyway in public places, I've heard) it's fine.
Congratulations Jessica on winning the LGBT Awards and for being an inspiration to the Disabled Community!. You truly are a pioneer 🤗🏆🌈🍾💐
I am a disabled parent who is also parenting a disabled child, and now also a widow. But I wasn't diagnosed with my fibromyalgia until he was nearly 4, and noone has ever officially diagnosed me as on the spectrum. Before that I thought my only issues were endometriosis, anxiety and depression. Which is not without challenges but the fatigue and pain got very very much worse after having him, which I know now large hormonal changes can trigger worsening of fibromyalgia.
Before diagnosis I put my back out 4 times in his first year, was extremely exhausted and was told all new parents are like that. Then it was blamed on him being a toddler, then being autistic.
I have learned in the past 16 years that kids don't really care if you can't do everything like "normal"parents. My son is used to picking things up off the floor for me, as a little kid he loved playing on the bed with me or floor time. He understands when I can't be touched right now or if I need to rest. Granted him being autistic helped because he also gets touched out and likes to be alone.
I frequently still feel like I am failing and feel useless, I don't think those thoughts go away, the worries just change as they age. But I'm honest with my son and he understands.
So many of the ways you accommodate yourself are so perfect for Rupert - I love hearing you talk about parenting him, it’s so clear that he must feel so seen and treasured
Once again congratulations for the prestigious award, with certain limitations you're working more than a normal person.... hatsoff prettiest
Do you still have a carer and do they help out with Rupert like go and get him for you if you can’t get out of bed ?
I have probably commented this on your videos before but it rings truer now that you have a precious little one. Please wear glasses with impact-resistant lenses full time to protect your good eye. Your baby loves your face and he has the potential to grab at your face and that puts the eyes at risk. Yep, he will grab at your glasses too, but having them there to protect the one good eye you have is super important!!
If you rediscover the nappy song, you should record yourself so that Claudia can help you get the rhythm/tone back if it escapes you again! :)
I was diagnosed with a disease called Cushing's when my son was 6.5 years old. It was due to a tumor in my pituitary gland and I lost the entire gland due to the tumor and brain surgery. I share alot of physical symptoms with people in the EDS community. I miss having a baby in the house. They're so easy. As long as they're fed, clean, and given lots of love and attention they're happy. I felt happy and fulfilled. My son is 16 now and I feel less happy and fulfilled. My days are spent feeling guilty because I feel so bad most of the time. I cannot do the things that I used to and we eat way too much fast food. On good days I function on 12 hours of sleep and a 2 to 3 hour nap. On bad days he may never see me awake at all. That's where the fast food comes in. I used to be a supermom. I'm still a good mom but I used to be so much better. I have an incredibly close relationship with my son which we may not have had if I were still healthy so that's a good thing. There's lots of negatives to being a chronically ill mom but just as many positives. I don't have a partner to share duties with, I think life would be much easier if I did but it is what it is. When he gets older you can spend bad days cuddling. My son and I spent lots of days doing picnics and movies in my bed. Played board games and whatnot. These days it's a no for him lol. There isn't alot of support out there for chronically ill parents unless you have an expiration date stamped on your forehead. Hopefully one day that will change.
The dark trim on a light outfit is genius! 😯 So glad the motherhood is going good and you have so many things to help you enjoy this time as much as possible. 🥰
I want to have children one day (a distant day since I am barely an adult) but I have so much fear as I am autistic and therefore am always tired and I react very badly to sleep deprivation and changes of routine. My doctor also suspect EDS as I suffer from unexplained chronic pain and other things that are related. So I feel my dream of having a child is incompatible with my conditions/probable disability (getting an appointment with a specialist to get a diagnostic takes sooo much time...). Yet, when I watch your vieos about parenting, I see it is possible and it fills me with hope and joy for the future.
I have a lot of respect that you have chosen not to show your babies face, its very considerate and the right choice, imo.
As someone who is not disabled, I am always really impressed by parents with disabilities. Like how y'all figure out how to work with your disabilities and take care of your needs AND the needs of your child impresses the hell out of me. I sometimes struggle to take care of myself and my needs, but if you added a kid and disabilities/chronic illness in the mix?? Jessica says she sometimes feels useless but to me she seems like anything but. The amount of structure and organization she maintains in her life is very aspirational tbh. And I love how you and Claudia work together as a team, you guys are really doing an amazing job as moms (not that I expected any different!)
"Essentially, I tired myself out way too much and I should have been far more sensible and taken it a little easier." Pretty sure that's the same thing every mom learns after the first baby 😆 all I remember of the first month after my eldest is dropping things, arguing that I didn't need to sleep and I was fine, and waking up on the floor next to the living room baby swing he all but lived in until he started crawling at all hours of the day and night with no idea how I got there! 😂
My husband is newly disabled. From a devastating......"accident" 2 years ago. The day it happened our 3rd child was born. This has been HUGE adjustment for our family. And much of it is very challenging. But the love of our children pushes up to keep trying.
Congratulations on your sweet little man. You're a beautiful warrior and despite the trials and tribulations, and your specific difficulties, motherhood is such a special journey. Love and light to you and your lovely family ❤
Please don't, you or anyone else with chronic pain, feel bad, guilty, ashamed, etc. about taking pain killers. There's nothing wrong with treating your pain when you need to with whatever you need to. We're not the ones that over prescribed and now are punishing those with chronic pain for the disaster caused by over prescribing. I hate how much that has stigmatized people with pain treating it like anyone else would treat an infection with an antibiotic. I'm more physically addicted to my antidepressant than I am my pain meds but people don't judge me for taking those.
Sorry about the rant. I just don't want anyone to feel bad for getting by however they have to.
BRAVO. I MADE SURE THAT NOBODY MADE ME DOUBT MY CHOICES FOR PAIN MANAGEMENT PRE PREGNANCY, ANTE NATAL AND POST NATAL. MY BODY, MY DECISION
I agree that you shouldn’t feel bad about taking pain killers. I interpreted what she said differently- I thought she meant the amount of pain killers she was taking was unhealthy as in possibly dangerous amounts that could lead to overdose
I think you handle life with style,grace and humor. Being disabled just means you have to do things a little differently. The love you and your wife have for your son shines through. He is a lucky boy,indeed. New subscriber.☺️
Your award was so well deserved, your channel is educational on sk many levels. ❤️
I love you videos so much Jess.
You are such a breath of fresh air. Just absolutely adorable.
As someone with a non working body, that mom muscle is huge!!
You are killing the mama thing. Im so happy for you and Claud
I've been a disabled parent for a year and a half now and expecting another child in August...I have to say it's a huge struggle, but once you're in the situation, you find a way to get your child what they need, no matter how horrible you feel. It's terrifying and amazing what we can do for our kids.
Whenever you're feeling down about yourself, remember that you've already accomplished more than most dream of. You may not seem like much in your own eyes, but you're a badass
My mother has chronic pain and migraines but was fully capable and present raising all four of her children. My mum tells me a story about how she always felt bad that she couldn’t run around and play with all of us and I, at around 4 or 5 turned to her and went “It’s ok, Daddies are for playing and Mummies are for loving”
Not being able to do certain things doesn’t mean you are less of a parent, it just means you have strengths in different areas.
It’s been beautiful following your journey and channel and seeing how much love you have for your boy ❤️
I was kinda surprised that having to sleep eight hours at night was a problem since that's the "norm," then I remembered... oh right, babies don't do that, lol. I sleep 11-13 hours (chronic fatigue as well -- recently been splitting it into 10-ish hours and a long nap, which is working better for my sleep schedule) so I don't think I could ever take care of an infant lmao
I normally absolutely need 9 hours but postpartum hormones are kinda fascinating and crazy, somehow I was ok waking up with my babies. When you are nursing it actually changes your sleep. Like you sleep lighter so you wake up with the baby easier. And somehow I wasn't much of a wreck. Now that my kids are older I'm back to absolutely needing a full night's sleep or I basically can't function. So weird.
There are ways for you to care for a baby. It probably means bringing someone in to help for the infant time. But if you really want a baby or if you find your partner has or is having a baby, there are ways to cope. Follow your dreams.
(I am not saying this would be easy for starry-eyed dreams. But if you do want to expand your family, plan carefully and it may be able for you cope.)
Same. I knew I got over 9 hours of sleep every night because of my chronic fatigue (and yes, I need that), but ever since I'm tracking it with a smartwatch I've realized it actually averages closer to 10 hours a night.
I've quit jobs (and in some cases been fired) because management couldn't get "no, I need 8 hours of sleep to function, I am not going to work until 11pm and be back at 7am." Our culture uses sleep deprivation as a badge of honor. If you bragged about how much you could drink and still drive, people would think you were totally irresponsible, but driving tired / operating machinery (and let's not even talk about doctors who work 72 hour shifts and are making life and death decisions) is ok.
@@Morna777 Right?! Even though there's plenty of evidence that suggests sleep deprivation has a very similar level of cognitive impairment to being drunk!
Unrealted, but it's really nice to see that you guys are respecting Rupert's privacy and not posting his face online. I feel like not enough parents nowadays realize that that sort of thing can make a child super uncomfortable, especially if the photos are from really early in life when they had no idea that they were taken. My mom has a lot of old photos from when I was a girl on her public Facebook page and it makes me a bit sick to think about how, if someone just knows my mom's name, then they can see a huge chunk of my childhood (and also have me completely outed to them). Love what you guys are doing!
you seem like such an incredible mum! what you bring to the table as a parent is unique and will be so so treasured by Rupert and of course Claudia as well. Which of course you know. But still worth saying!
I’m a disabled mother. Think the best advice I can give is go easy on yourself. We can have off days and that’s ok.
When I was a baby and my sister a toddler, my mom called my grandma, panicking, because my sister's bowel movements were "bright green." My grandma asked what she'd been eating and my mom said "cookies." Grandma then asked "who made them" and my mom said my dad did. My grandma, knowing her son, said "It's just from the food coloring, she's fine." (My dad LOVES to use food coloring). Everytime I hear new parents talking about their experiences, I think of that story and the one where my parents credit my sister for my safety when I was on the changing table. They kept forgetting to hold her on there when they turned to get a diaper or whatever and she'd roll off...when I came along, they had learned! 😂
My mom did the same thing when my son (who is turning 30 this month) was about 18 months old. My sister was visiting with her family and her younger son had issues with his G I tract. He has XXYY and it was common for him to have some bleeding which was obvious during diaper changes because his stool would be very dark. My mother was helping my son use the potty chair and thought he was having issues but he'd been eating Oreo cookies and that was turning his poo almost black LoL
Evidently, kids should not have cookies!!!!!
As someone who often has dulled senses (ADHD and dissociation are a stunning combo) I’m a big believer in our body’s ability to judge proximity, especially based on patterns, for me it totally makes sense you’d be able be alerted to Claudia being away from the bed longer than usual due to that lack of proximity. I get it a lot as my partner has insomnia and when it’s bad his sleep schedule is less than continuous, he are definitely not sleep cuddles but he always jokes if he’s gone for more than 30 minutes I’ll realise and either come find him or ask about it in the morning.
thank you so much for making this video and being vulnerable and honest about all of this. You seem like a wonderful parent! My ouch word is "lazy".
Advice from a cleaning lady: get another vacuum cleaner for upstairs. In fact, get a second set of all you need to clean for upstairs. When I started work in a 3 story house with no lift I only had one vacuum cleaner. It's not only the effort of taking your vacuum cleaner up and down the stairs, it's that it's dangerous! There's a tube and a cord, you can get tripped up and fall! I told my boss that and I got full equipment in each floor. No falls have been had and my back thanks me. Honestly, even if you don't have storage space and it's a bit ugly having that stuff (must have a safe spot for those detergents, though! little kids have big bad ideas!) our health is worth more than aesthetics. Much love! ❤
I would love to see about his signing journey and him learning BSL :)