3 Months of Being a Disabled Parent (fears update) // [CC] [AD]

[@jessicaoutofthecloset]

*Captions are being made, thank you for your patience!*

[@MiFuHi]

Thank you :)

[@Joe-mt7km]

Hi Jessica! 👋

[@MxLulo]

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 KZbin videos I see have either really weird captions that don't seem to be actual language, or are just the machine guesses. I know KZbin's caption policy changed, though.

[@Nheeb]

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! ;)

[@TiffanyAllen1784]

The caption interpretation of your little song before the memory loss segment made me laugh more than it probably should have....

[@rachelwills8465]

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!

[@missz9241]

because even if u not doing something physical u are there in mind and love they both know it

[@NZKiwi87]

@@missz9241 This ⬆️ Priceless 💚

[@KatieBadenhorst]

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.

[@ixykix]

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

[@teresagustafsson3527]

I agree, it really sounds like you've got it, taking turns in a way that works for both of you.

[@rubigee4397]

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

[@lindaleriel]

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.

[@rubigee4397]

@@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

[@ixykix]

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

[@ariste01]

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.

[@mxxnsmelxdy]

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.

[@KimberlyJ424]

I washed my daughter in the kitchen sink too a few times. It helped save my back.

[@bevsims1982]

Absolutely 🤗

[@loveland852]

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.

[@ariste01]

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.

[@SheKnives]

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.

[@millies2788]

It's my word as well. Nothing else gets to me like that word

[@beccastell6439]

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?

[@leomonteiroart]

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".

[@forforever4980]

Mine is 'desperate'

[@lydianethercutt8499]

Kindred spirits. Lazy is mine too, but burden also hits hard. Also dramatic.

[@KylaFallenAngel124]

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.

[@dees3179]

She’s fantastic, good recommendation.

[@ChiaraBells]

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[@marymohr2799]

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[@westzed23]

Great suggestion! 💗

[@millacernemusic]

I love her!

[@sallyjordan4869]

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. 🎀💖🎀

[@KindCountsDeb3773]

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

[@emmynoether9540]

So well said!

[@stephanieann8115]

@@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🤣

[@KatieM786]

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.

[@morgancrenshaw6620]

you said this perfectly!

[@felicitygee381]

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.

[@debs2026]

😔

[@lynn2574]

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.

[@saragarofano6471]

It can be so intimidating to know that the lone with "stolen childhood" with these things can be so blurred and easy to reach

[@QueentDB]

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.

[@lynn2574]

@@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.

[@katherinemorelle7115]

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.

[@dianet1659]

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.

[@throughthedin]

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. 💖

[@westzed23]

Thank you. I needed to hear this today.

[@Yjen]

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.

[@evercuriousmichelle]

Also check out Paralyzed Living on KZbin, 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!

[@MothproofKT]

Thank you for sharing. I will definitely try and find her page. The prospect being a disabled parent is incredibly overwhelming

[@KatieM786]

There's also a lady on KZbin called Wheelsnoheels who has a family and lives her life with a spinal injury.

[@littlefurnace]

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!"

[@easilydistractedtutor]

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.

[@theonlyenekoeneko]

100% !! Let’s reclaim!

[@rachael4345]

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.

[@demolitionwoman_OFMD]

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.

[@gnostic268]

@@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

[@Jesterisim]

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

[@tarahurd2723]

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

[@fiig5196]

I was going to say the same! It feels like only 3 months ago they announced claud’s expecting ☺️

[@aryore2411]

That's how babies go, time flies haha

[@jwatson11]

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!

[@N_Garamond]

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

[@1234bobfox]

This feels so heartwarming. The idea that it's hard to explain that you are a KZbinr 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 KZbin and KZbin culture...

[@katwitanruna]

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.

[@KMMHealy]

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!

[@debs2026]

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.

[@katwitanruna]

@@debs2026 why are you screaming?

[@katwitanruna]

@@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.

[@katwitanruna]

@@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.

[@SavannahLogsdonBreakstone]

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.

[@westzed23]

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.

[@rabbit__]

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.

[@fredadufaur2218]

@@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]

@@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.

[@westzed23]

@@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.

[@YoSamdySam]

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.

[@nikkisweezea2388]

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.

[@jodiesandiford6503]

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 ♥️

[@emmynoether9540]

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[@aprildawnsunshine4326]

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.

[@jodiesandiford6503]

@@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 :)

[@julianamagg3177]

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)

[@justynafigas-skrzypulec3349]

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.

[@missasissa]

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. 😊

[@jsomebody2289]

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).

[@carollizc]

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.

[@Rhaifha]

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.

[@ToriaEuphoria]

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 🤍

[@analuisa1214]

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 💛

[@nycdyke2867]

Why are you desperate to have a baby?

[@ToriaEuphoria]

@@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!!

[@ToriaEuphoria]

@@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.

[@Cece_who]

Here it is totally normal to have kids on a leash So they don't get kidnapped ...

[@WritingMomSamanthaLNasset]

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.

[@CartePostale.]

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!!

[@WritingMomSamanthaLNasset]

@@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.

[@WritingMomSamanthaLNasset]

@@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.

[@SuppDiggyDawg]

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.

[@isabellegrady4324]

Me, in a lesbian relationship with no want for children: ah yes the electric buggy

[@cheesecakelasagna]

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.

[@AvoryFaucette]

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.

[@Victoriasm31]

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.

[@disabledconstellation]

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.

[@SalomeMin]

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

[@KamuCreates]

I have a lot of respect that you have chosen not to show your babies face, its very considerate and the right choice, imo.

[@bw3839]

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

[@octaviabishop186]

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.

[@HelennaRose]

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.

[@moofishcosten4598]

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!

[@halgaucher6730]

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.

[@freyaporter99]

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?

[@jewellerylove]

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.

[@TheJenna52]

Having left baby parenting 50 years in the past I say ya' ll are doing just fine. Working it out as you go.

[@stephanietexeira]

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.

[@Palindrome78]

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! 😂

[@gnostic268]

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

[@Palindrome78]

Evidently, kids should not have cookies!!!!!

[@amyvertacnik281]

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.

[@JudyCZ]

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. 🥰

[@raccoonspirit5369]

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.

[@Brooksie603]

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.

[@kiernanscanlon8965]

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! :)

[@justhereforthevideos2798]

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 ❤

[@meluvfriends]

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

[@RM-ju2bg]

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 ❤️

[@diabolicaldebbie]

Congratulations Jessica on winning the LGBT Awards and for being an inspiration to the Disabled Community!. You truly are a pioneer 🤗🏆🌈🍾💐

[@katyjewett9523]

I have had a lot of success with a Roomba. It doesn't hold much, but I have two cats and run it every day and it has held up to the task for a year. It is so, so nice to not have to push, pull, manipulate, and wear myself out over such a miserable chore.

[@random23287]

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! ♥

[@button4631]

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.

[@gremlin4304]

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

[@Brainstorm_606]

Once again congratulations for the prestigious award, with certain limitations you're working more than a normal person.... hatsoff prettiest

[@Cove_Blue]

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.

[@debs2026]

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

[@okestperson6016]

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

[@laurenragle5228]

At the time my parents had me, they weren't as disabled as they are now. But I can say you end up learning a lot with the first kid. One time, they forgot to feed me and they sat down to pizza for dinner themselves. I cried and cried and cried until they realized my mushed peas and carrots (or whatever it was) was still unopened on the counter. Lots to learn with the first kid! But I know you're doing a wonderful job. ❤️

[@elijahh2220]

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

[@anona2017]

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.

[@westzed23]

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.)

[@Rhaifha]

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.

[@Morna777]

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.

[@Rhaifha]

@@Morna777 Right?! Even though there's plenty of evidence that suggests sleep deprivation has a very similar level of cognitive impairment to being drunk!

[@atlroxmysox98]

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!)

[@EyeofSekhmet]

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.

[@nicolejewett4122]

I would love to see about his signing journey and him learning BSL :)

[@beanoneya]

I'm a disabled mother, but I never even thought of making content about it! No one talks about how hard it is after you have the baby. I'm glad for your body that she had the baby. My body was soooo effed after. I have hEDS/pots/mcas.

[@MissEmJayC]

Been looking forward to seeing how you've been finding things. Hope everything is going good for you both. Lots of love from another disabled mam 💜

[@andrealee33]

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.☺️

[@kickdropacoin]

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".

[@mariboni516]

I completely understand much of what you are going through. I applaud you for keeping a positive and calm attitude when most would be losing their minds. One of the most important lessons I have learned as a parent, caretaker and (somewhat) disabled person is, we can't pour from an empty cup. It's important to care for yourself and adjust accordingly. You are doing wonderfully and are amazing! I look forward to your next video. 🙂

[@LarixLyalliiAlpine]

Across the board, most able parents assume the child is disabled as opposed to us as parents. I'm in a fb group primarily for parents with ADHD and the admins recently had to do a rules and group description update just to let newcomers know that the group isn't the "standard" for NT parents of ADHD kids. I'm also someone who needs at least 7 hours of sleep straight, but my husband is like you - if he doesn't get sleep he's down for the count. So I handled nights for the first year or so of my son's life.... Which I don't remember a ton of because he didn't sleep through the night until he was 11 months old. 😅 And by that I mean he needed night feeds every hour until he was 11 months old. But yeah - he's slept through the night ever since, thank goodness.

[@dlgscarlett]

I am so happy to see that you are doing well with baby! Being a disabled grandparent, I to have worries and fears. My biggest worry is that I am not able to pick up my grandson when he is crying or just wants to be held that this will damage his little psyche. Oh and I completely understand your other fears too. You have demonstrated that you can be a strong influence in so very many lives, please may I say, you will be fantastic as you continue to accomplish 😊 goals. I adore you, Claudia and Rupert, thank you for giving us a small glimpse into your sweet little family world. Thank you 😊

[@vanessaf7259]

Momming with migraine is currently pregnant with her second and her children will be Irish twins, so she’s really going to have her hands full!

[@chkris6889]

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!

[@MaidOfPasta]

Claudia: I need TP Jessica: there is a disturbance in the force

[@katiemoss7578]

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 ?

[@sweett5896]

Yes useless is my word too. I suffer fibromyalgia, Chronic Fatigue, extremely bad vertigo, chronic back pain & migraines, along with a whole host of other illnesses & I hate feeling useless or purpose less. You've helped me a lot, like I've always wanted children & thought how could I ever, until I started watching you & saw with a supportive partner, a bit of work & adjustments & tools that it's possible.

[@gemjule]

You've got Spidey sense for ur loved ones that's dope

[@TheLadyWeaver]

I'm three minutes in and she hasn't mentioned the migraines. Bless you Jessica, from a fellow migraine girl. Also, now I want a beautiful fancy "Floppy Jess" doll with flowing red hair and a poufy skirt.

[@carexcell]

You have done an amazing job! You stepped up and got things done and everyone is happy and healthy! I like your shift plan with Claudia. That's a great system!

[@feezlfuzzl564]

The word that triggers me is "victim." My mom has often called me a victim, and also other people--that's why she called me one, when I accidentally reminded her of others. It was extremely difficult, though now she's better about it. What she meant by that word is not the proper term, but someone who makes things up or blows things out of proportion for attention.

[@halgaucher6730]

It’s so frustrating that people do that to the word. If we’re using victim pejoratively, what does that mean about how we think? It’s never the systems or people who cause the harm being scrutinized, it’s the disabled and abused who take the brunt of the criticism for not just “dealing with it.” I’m so sorry that the word has been weaponized like that for you.

[@Iwas15whenImadethischannel]

This was just what I needed today. You are inspirational . You always seem so calm. I'm stressed all the time. Being stressed is the only way I get things done when I don't have the energy to do them. I wish I had a life like yours.

[@cindygiesbrecht3146]

I think the sleeping on the floor is an awesome plan. That way he has nowhere to fall from!

[@colorfullyme]

12:00 my word is "overthinking." On the one hand, I have been diagnosed with OCD and so I know that I do actually overthink. But people use it time and time again to invalidate my feelings and gaslight me instead of addressing my concerns. 99% of the time, what I was sensing or worried about turns out to be true, even if my level of anxiety was not helpful. Instead of self-reflecting or admitting that the situation is complicated, people sometimes push it onto me for pointing it out. But I am learning not to accept being spoken to that way and to surround myself with honest and respectful people. Wonderful to see you figuring out parenthood! It seems like you are really enjoying the journey and getting to know Rupert in such a beautiful way :D And I love what you said about insecurities, "I'm allowed to have them, but I should definitely deal with them." YES

[@BrownAutumnSeal]

Aaaaa nothing better to come home to after the first day of school :))))

[@anawsomehuman3064]

it's my first day back at school today as well! the thought of a new video kept me going through the day

[@EyeGlassTrainofMind]

Ooh good luck to you both! It's my first week of school and agreed, this video was most welcome!

[@cheryldueck318]

It was a treat seeing your name! That ‘s what we named our eldest daughter, but I don’t see it often! Also, just finished my 3 day of my first year working in schools as an education assistant. This was indeed a lovely video to watch as I sit here sleepily.

[@Ellaodi]

It sounds like you guys are doing a great job. These are all things that every parent goes through, differently-abled or averagely abled. I can't tell you the number of times my mom forgot to bring something with us that we. I'm also very forgetful, so I used to have and out the door checklist before I would leave the house to make sure I didn't forget anything. I'm putting everything always back in the same exact spot or prepping the bag when you get home is always easier

[@NosyHausfrau]

You're doing an amazing job. You just reminded me that when my son was a baby I signed with him because that was a faster way to communicate. We are both hearing but I learned this because my niece was born deaf. Since babies can sign before they can speak, It was truly helpful.

[@Vixenventures]

You listed off so many problems that I never would've imagined you have to deal with. You are utterly fabulous and I feel inspired/motivated by your tenacity. Get it mama!

[@mhussey9841]

I was born in England in the 90s but have been living in the US since 2001 and we still keep in touch with our NCT group! My mum recently connected with the other mums again during quarantine and it’s wild the different paths all our lives have taken.

[@88WWitch]

You should totally do an update after he becomes mobile (crawling or walking.) I love these updates! You're doing so well!

[@akitoherinton8249]

I don't think anyone is going to see this, but I'm putting it here anyway because I just need to say it. I cried for over three hours straight last night because I though I would have no chance of being a parent because my health has been getting very bad. I'm disabled. All that stuff. But this video right here has given me so much fresh hope. This has helped so much. Just your energy, your kindness. You have some similar issues to what I have. Not the same, but similar. and if you can cope, and you can have a family. Then I can too. so now I have my dream back, and all this new hope. and I'm going to be more careful now, and try so hard to not loose hope. And I thank you so much. You've helped me so much with just this one video. I stumbled upon this at the perfect time. For once KZbin has sent me something helpful instead of videos and ads that just upset me more. This was nice. I'm crying again, but this time it's because I'm happy. Thank you so much.

[@anawsomehuman3064]

does anyone know where her lipstick in this video is from? it is STUNNING

[@daintydiplomat]

Commenting in case you get a reply!

[@venicecheng9407]

most like besame cosmetics, because she made a video in the past about her vintage lipsticks 😊

[@tiggerbuttdelove]

My 'mums' group had a non-birth parent who came to every meeting, maybe he felt a bit left out at the start but he kept coming and it was great. Sorry you felt unwelcome at yours x Sounds like you're doing a great job, thanks for sharing your journey.

[@cheesecakelasagna]

Aw, I love that. Hope he's doing better with the group now.

[@saralouisehowells1766]

I am a disabled parent (mobility, hearing impaired, OCD) to an almost 9 year old and the challenges come daily. Both my husband and daughter are abled. I appreciate how much my daughter is able to do for me in terms of picking things up when I am not able. We got her a "partner mic" for my hearing aids so we can communicate at the grocery or in the car [she sits behind me and I cannot hear her from that position]. My friend and I just started an arts nonprofit and will have our content out soon. We are both disabled and look to you for inspiration and will continue to celebrate all but highlight artists and creatives with disabilities.

[@narnigrin]

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.

[@cocobear285]

You should make a video about your bath time routine. For the very fact you mentioned in the beginning. There is little content for parents who are disabled. Add to the content on KZbin! I just say that because I know not everyone likes social media, but KZbin is there for everyone.

[@ohshitjeffrey3741]

I love you from the bottom of my heart, and of course Rupert and Claudia Too!! You are a shining light and the epitome of who and how a human should be. I feel we are so lucky to have been blessed with you sharing yourself on KZbin. Please be gentle with yourself, we have a long time together here on earth and I can’t imagine a happy life without you sharing your journey and so lovely a personality as you’ve shown. Wish I could be more effusive, but let’s just say you are someone to emulate and support, amen

[@ellinorkihlstrom367]

Jessica, you smile when you talk about your son and wife. That is enough. You're doing fantastic!

[@isadoravieira4477]

Your video just made me go through a hole searching journey on google over behavioral content. XD Also, what an amazing take on parenthood while being disabled! It's important to share these experiences because there's almost no information out there about the good, the bad, and the ugly of this life-changing experience, so people end up with no idea of how it would be to take care of a child while having a disability. Even in the media, there's no representation of it. :/

[@youngse22]

My disheartening word is actually a thing. I have a poor memory and when i forget something at work my co-workers roll their eyes and walk away. 😡

[@_megwaters]

I know this comment is a little late but as someone who has grown up with a disabled parent (my dad had a stroke at the age of 3 leaving his left side in muscle wastage, spasm, and other stuff I never really got) I know that I never really knew of a difference and just see it as normal. This exposure has also made me so much more interested and proud of disabled people especially those with hidden disabilities as the amount of shit they go through makes the community so much stronger not weaker as most often think

[@Joe-mt7km]

Hi can you do a historical profile on Marlin Monroe?☺️❤️🧡💛💚💙💜🥰

[@duckyluver12]

I don't know any disabled content creators with children, but I do have a friend with autism who's a dad of an 8-month old. He and his wife for sure had trouble planning for their baby because like you said, all the resources online are geared towards parents of autistic children, not autistic parents. (He's doing wonderfully as a dad by the way)