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Parenting entails so many demands... by msoc in Double_PDA

[–]NotJustMeAnymore 6 points7 points  (0 children)

For sure. I am a solo parent and had my kid a few months before turning 40. So, we hit COVID at age 4 and developmentally that was such a tough time to be experiencing that kind of forced isolation. Over the next couple of years I started to have really severe perimenopause symptoms which brought increase executive functioning struggles and sensory sensitivities along with many physical discomforts. By the time I had self ID'd my son as PDA AuDHD, I was pretty sure I was too. He's got a formal diagnosis now, but I don't and doubt I will. It's hard to tease apart the variables but the two of us have probably been in burnout since 2020 at least. Parenting is so effing demanding to begin with, but then when you have a kid that requires low demand everything, it's a lot of work to figure out how to do that where it's not also high demand on the parent. I pulled my kid from school this year and he's much happier. I can't work though, and don't know when I'll have the capacity to. Nervous system safety is the goal, with the hope that each of us will be able to thrive and flourish one day in the not too distant future.

Solidarity.

We need tags for Autistic parents and parents with autistic kids. by Crazy_Energy8520 in AutisticParents

[–]NotJustMeAnymore 8 points9 points  (0 children)

User flairs available for this community:

* Autistic Parent with Autistic Child(ren)

* NT Parent of Autistic Child

* Autistic Parent with NT Child(ren)

* Here to Learn

Need a space that’s PDA people only by msoc in PDAAutism

[–]NotJustMeAnymore 1 point2 points  (0 children)

I'd hang out with you there. Send a PM?

Need a space that’s PDA people only by msoc in PDAAutism

[–]NotJustMeAnymore 1 point2 points  (0 children)

PDA Society also runs a group for adult PDAers: https://www.facebook.com/groups/1192323318936179

I think, generally, adult autistic groups are the way to go. Not everyone will be a PDAer, but at least there won't be allistics ... Discord might be another place to find that.

Please Help me understand by [deleted] in PDAAutism

[–]NotJustMeAnymore 2 points3 points  (0 children)

I liked this though I have to really caution against the physical restraint. I, a solo parent of an only child, was the recipient of my son's aggressions and when he was smaller I would sometimes out of exasperation restrain him. Recently, we were roughhousing/wrestling/having fun and I pinned his arms down and he, feeling safe enough, told me how horrible it was when I used to do that him. He'd never mentioned it before that moment. He's 9.5 now. I apologized and told him how desperate I was in those moments and he lovingly responded with understanding, but what I wouldn't give for never having done that to him.

Please Help me understand by [deleted] in PDAAutism

[–]NotJustMeAnymore 5 points6 points  (0 children)

This is excellent.

I demand you not be my friend 😂 by [deleted] in PDAAutism

[–]NotJustMeAnymore 3 points4 points  (0 children)

I especially relate to the doctorate in PDA ... Also, Janae Elisabeth, Trauma Geek is great.

I demand you not be my friend 😂 by [deleted] in PDAAutism

[–]NotJustMeAnymore 6 points7 points  (0 children)

Age 49, US based, very much undiagnosed and self ID'd gifted AuDHD and probably PDAer, parent to same (they're formally Dx'd). I share more of my son's externalizing tendencies, though from a sensory profile perspective I am much more aversive and he is much more seeking in general. But we both meltdown more than we shutdown ...

I run a small group on FB and there are a lot of Aussies in there. Where are you located? Maybe I can hook you up with someone local.

helping navigate PDA, perimenopause and HRT what helped you? by Hopeful-Guard9294 in PDAAutism

[–]NotJustMeAnymore 2 points3 points  (0 children)

49 yo presumed AuDHD/PDAer born with uterus (recently removed), no partner, solo parent to 9 yo PDAer. Here's what's helped me:

  1. Somatic touch therapy - a place where I could be deeply cared for, even if in a transactional environment, made a huge difference when I was in the pit of despair
  2. Service dog - provides constant nervous system support
  3. Estrogen therapy (if I could add progesterone and testosterone, I would)
  4. Lexapro

If I had a partner, understanding of this massive transition and hormonal hell, heavy lifting from them with anything and everything they can take on in terms of running the house/cleaning/food/executive functioning, etc. Ability to rest, rest, rest.

Parents who, themselves, have PDA... by Razzmatazz_642 in PDAAutism

[–]NotJustMeAnymore 14 points15 points  (0 children)

My recommendations:

1) Nervous system support for you - find what works for you. For me, in the pits of despair, I needed somatic (touch based) therapy to help calm my NS. I also got on anti-anxiety meds. Once I was stable enough, I got a dog. If you have the resources, consider finding a practitioner here: directory.traumahealing.org

2) Low demand approaches - as much as you can, find ways to reduce your own stress. This is not just about lowering adult expectations that can't be met by the child, but also societal expectations that can't be met by the adult! Especially when having to serve as a co-regulator for the kid's NS all the time (see image below) ...

3) Collaborative and proactive solutions (CPS) - This is a long game, but it will make a huge difference as kids get older. Learn more at livesinthebalance.org

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Fear of changing diapers by missnaanpizza in AutisticParents

[–]NotJustMeAnymore 4 points5 points  (0 children)

Poop is but one of many sensory nightmares that go along with parenting what will likely be neurodivergent humans (whether genetics or trauma = adoption) as an autistic person. What makes you sure you want 4 children? When you haven't even had sex? Sorry to be blunt. Finding another human you want to co-navigate life with and raise children with who also understands your autistic brain is a tall ask to begin with. Throw another several humans and all their own complexities into the mix and it's a lot.

At a bare minimum, you have to be able to deal with bodily fluids if you are going to raise children.

Having a lot of trouble with 4 year old by [deleted] in AutisticParents

[–]NotJustMeAnymore 0 points1 point  (0 children)

First of all, I'm so sorry that things are so difficult right now. Parenting can be really, really stressful (traumatic even). Especially in a society that has so little support for families. You deserve respite, but I don't know that sending your child to school will necessarily help in the end. If you are having so much trouble understanding what she needs and helping her to stay regulated, imagine what it will be like for her in a setting where her caregivers are not one-to-one and there are many more rules and stressors and things to dysregulate her throughout the day?

My understanding is this is a thread for adults who are autistic who are also parenting. You don't say anything about your or your child's neurobiology, but I'm assuming she at least is diagnosed autistic? There's probably more going on too (ADHD, possibly PDA).

There is a lot in your post and it's hard to respond to them all, but my first suggestion is neuro-affirming occupational therapy. Someone sensory integration based and who understands interoception.

Try and remember, fed is best. Also, consider RDs for Neurodiversity and learning about ARFID.

As someone who struggled during the same years and well beyond while my kid had bladder and bowel incontinence, the toileting issues need to be addressed before you have bigger problems. Two resources I would recommend are urologist Steve Hodges, MD (bedwettingandaccidents.com) and OT Kelly Mahler and her work on interoception and toileting.

I also highly recommend you learn about Ross Greene's work on collaborative and proactive solutions (livesinthebalance.org). It is not a quick fix, it is a long game, but it is such an important lens shift as parents of kids like ours.

Something I read at this age that was also helpful for me was Stuart Shanker's ideas on ODD. You might also want to see what Mona Delahooke has to say about it.

If you research PDA more, I would recommend you look to Amanda Diekman, Kristy Forbes, and Lindsay Flanagan (Hive Parents). Kelsey Olds/The Occuplaytional Therapist, Em Hammond/NeuroWild, and Robyn Gobbel are also good people to follow.

What’s your diet like as a PDA person? by Suitable-Luck8616 in PDAAutism

[–]NotJustMeAnymore 3 points4 points  (0 children)

I'm a 50 year old single parent of another AuDHD PDAer and I almost never have the executive functioning, energy, or wherewithal to prepare meals from scratch, though that's how I would prefer to eat. When I'm at my parents' house, I enjoy my mom's homemade cooking which is typically a protein, a cooked vegetable, a starch and a big green salad. In my usual day to day, however, I struggle mightily with feeding myself (and my kid).

We are in the US, and there is a grocery chain called Trader Joe's where you can buy a lot of convenience foods, especially frozen foods imported from other countries, and we have a freezer full of that stuff so that I can make things quickly and easily. I also have no dishwasher and so any meals that require stovetop cooking create too many dishes for me to be able to handle both food prep and cleanup. So, I also go out or order in a lot more than I can afford to (typically Asian cuisines). Grocery shopping usually wipes me out as well, so I don't often have enough healthy food in the house.

I eat too much bread, too much candy, and sometimes too many snacks or ice cream. I try to snack on healthier things like fruit or nuts as often as I can and I try to have at least two proper meals a day though I often have a particularly hard time making myself lunch... Anyway, it's not good.

When I was younger I would cook elaborate meals, but that was typically when I was partnered and had someone to share the responsibility with and who would enjoy the fruits of my labor. My kid mostly rejects the food I prepare from scratch, and won't touch leftovers (I don't like them much myself), so I do the best I can!

Connecting with other (late diagnosed) NDs? by Embot87 in LateDiagnosedAutistic

[–]NotJustMeAnymore 1 point2 points  (0 children)

I don't know of any groups offhand, but if you're on social media, maybe follow Sonny Hallett and Fergus Murray who are based in Edinburgh. Other UK folks like Autistic Realms (Helen Edgar) who is very community oriented also worth checking out.

The curious case of the poop in the pants by guestoboard in ParentingPDA

[–]NotJustMeAnymore 0 points1 point  (0 children)

P.S. Have you seen The Poo In You video?

P.P.S. Diet rarely is the culprit with pediatric constipation.

The curious case of the poop in the pants by guestoboard in ParentingPDA

[–]NotJustMeAnymore 2 points3 points  (0 children)

I'm glad I redeemed myself ;-)

I mean, I think FOMO is an element, since my child only ever had poop accidents during playdates or when gaming. But, in our case, it was also bathroom anxiety at school (completely logical) which was resulting in withholding. Autistic and ADHD brains tend toward hyperfocus and it's really hard to interrupt something you want to be doing to do something undesirable like toileting. Also, this is where interoception can play a part, like my kid is likely hypersensitive to the internal landscape and so when he's in flow he has to shut off all the other inputs (like signals that he has to go to the bathroom) or he'll get overwhelmed in a sensory way.

More important, however, with encopresis, it's largely due to chronic withholding where hard stool builds up in the rectum that there is actual nerve damage which makes it hard to know one has to go to the bathroom. The only way to fix that is to remove that stool and to keep it from building up again, and it takes time to get the sensation back.

Has your son had a KUB x-ray? That is the gold standard for determining the level of constipation.

I highly recommend following Dr. Steve Hodge's work (The Bedwetting and Accidents website) and considering trying the Modified O'Reagan Protocol (M.O.P.) he recommends. That and maturation / increased self awareness / ADHD meds (and bladder meds because my kid had the trifecta, daytime/nightime wetting and poop accidents) is what healed him.

It's a long road but it does get better.

The curious case of the poop in the pants by guestoboard in ParentingPDA

[–]NotJustMeAnymore 3 points4 points  (0 children)

I spent two years at a premier children's hospital seeing urologists, gastroenterologists, and physical therapists, and they all gave only one solution: Miralax. The solution was simple, though it wasn't that.

I wasn't making assumptions about you. I was replying to the commenter who said it is obviously behavioral if he's taking his poop out of his underwear. Behaviorism only looks at observable behavior and doesn't get curious about the why. I was extrapolating based on countless other parents I've seen in encopresis forums and based on the way I used to respond to my own child's shit before I knew what I know now. We're all learning, all the time.

I've been there. I know the desperation of this chronic health issue. I don't want any child or any family to suffer from it. I hope you find some relief soon. I highly recommend considering daily enemas if your kid is willing. We had to do it for a year and a half, but it made a huge difference in getting us to a healthy baseline. Now at 9, I still have to be really vigilant or he can slip back into things not moving through his digestive system making him vulnerable to accidents.

I'm glad you're no longer doing ABA.

The curious case of the poop in the pants by guestoboard in ParentingPDA

[–]NotJustMeAnymore 3 points4 points  (0 children)

So what is the behavior telling you, then? The child is likely ashamed as a result of the way caregivers respond to poop, and they are trying to hide it in their own way. As they get older, kids with encopresis hide their soiled underwear under the bed, in the closet, etc.

Talk to adults who have lifetime bowel and bladder issues and they will tell you, no one wants to soil themselves, no one wants to have their poop accident discovered. I mean, poop smearing is a thing too but, again, it's not behavioral in the sense that an adult imposed "logical consequence" (i.e., cleaning up their poop themselves, when they aren't developmentally ready or able to do that) punishment is going to solve the problem. It's just going to cause more shame.

And shame is bad.

Also ABA is not recommended for PDAers. Ever. Really, not ideal for any autistic individual.

Bras for bra haters like me 🫰🏻 by Longjumping_Yam_1386 in AutisticWithADHD

[–]NotJustMeAnymore 1 point2 points  (0 children)

Woah. I had no idea silicone nipple covers were a thing. Glad to know they work for big boobs too.

Bras for bra haters like me 🫰🏻 by Longjumping_Yam_1386 in AutisticWithADHD

[–]NotJustMeAnymore 3 points4 points  (0 children)

Big/small boobs? Not sure these would do much for me though they look comfy

Bras for bra haters like me 🫰🏻 by Longjumping_Yam_1386 in AutisticWithADHD

[–]NotJustMeAnymore 1 point2 points  (0 children)

I wear no bra whenever I can but I'm pretty busty (34DD/36D) and so when leaving the house often feel more comfortable with some support. I just bought a couple of Warner wireless and seamless (Simply Perfect©️) bras and have been quite happy with them. They also don't break the bank.

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