I have a vent too

[Deleted]

Mine is a minor vent, but sometimes I hate the role of being educator on everything.  Everyone asking me questions on my high risk pregnancy, everyone asking me questions about breastfeeding (no one at work had every BF), everyone asking questions on DS's heart surgery to the point I had to tell them to stop asking because they were debating with me on whether he needed it or not (you don't know his medical history nor are you a doctor).  Explaining to my co-irker 5 times that DS's large tonsils caused his sleep apnea, and now it has been fixed.  She keeps asking me if he is on a CPAP machine, no I have told you this 5 times already. 

Then now the questions about the hearing aids have started.  I know all in kindness, and just trying to understand them etc., and people don't know until they go through it. 

And I know that what I think is common sense is likely probably not common sense, and not everything knows things, but dang sometimes I want someone to just get it or research it on their own.  I have one friend that works in a residential adult community center- she gets it, and is a rare gem.  I have a list of people that I need to reach out to, she is on the list as well as another friend whose child has hearing aids, so maybe I just need to do that. 

Do you all sometimes feel this way? 

[mamaturtle]

I know how you feel with coworkers.

I had a few coworkers mention things to me. And some negative sayings that stuck even though it has been years said.

I have the oldest child in my department at 7 years old and some of my coworkers' children are all younger. It seems that 2 of my coworkers have come forward saying their kid is delayed and is receiving therapy of some kind.

I am thinking even though you already told your coworkers all of this. I think they are trying to make conversations with you.

I just find that my coworkers will never understand me even though they cycle in asking the same things occasionally. I mean I have to take more time off than anybody because of DS.

[mirandah]

Yup. I have had to explain why Montessori is generally not good for ASD kids a million times. Everyone I meet who learns DS has ASD immediately goes to Montessori for some reason. Or diets. Or hyperbaric chambers. I'm always neutral on the issue and point out that things work differently for everyone. Another ASD mom in my scout troop accosted me recently about fecal transfers as I was preparing a meeting and I had to take a deep breath and walk away.

I also feel your frustration over ppl not finding things out on their own. I recently started attending an ASD support group and I've learned so much. There are some parents I know who avoid such groups- but they want to get the info from me, or they get mad that the info wasn't made available to them. You have to do some work- while it would be nice if the school gave us every resource under the sun, it probably won't happen. Do your own homework.

[chickypoo2468]

I don't know if this will help you. I got so tired of explaining so many things to do many people, I couldn't remember who I told what to and I was even confusing myself. I was just burnt out. I ended up making a private fb group and added all family or anyone who was interested. I laid out the whole backstory and now whenever we have a new appointment I just go on there and write a new update. MH even reads it because when I tell him there's so much and he just can't remember it. It's been a lot easier for me and still kept everyone involved.

[mrsbuttinski]

I did a lot of this sort of information stuff early on. Back in 2000 very few people had heard of autism much less Aspergers. It was exhausting and inconvenient at times.

I have a friend who carried small cards with links to an information website to hand out.

[numbbears]

I go through phases where I want to explain everything and then I have times when I just feel tired and don't feel like putting effort into it.

[luvboston]

I have many vents but my main one is that my child has an undiagnosed disease and it's getting old chasing down ppl to help. And Mass General lost all 3 packets of medical
Records that are supposed to already be at Mayo and CHOP.

[chickypoo2468]

Nov 16, 2016 21:29:45 GMT -5 luvboston said:

I have many vents but my main one is that my child has an undiagnosed disease and it's getting old chasing down ppl to help. And Mass General lost all 3 packets of medical
Records that are supposed to already be at Mayo and CHOP.

Omg.

[mrsbuttinski]

luvboston,

I am so sorry. I feel your pain

I am currently dealing with moving my parents local to me and transferring their medical care from 3 other states to HUP- As of this week, only their PCP, mom's pulmonologist and dad's urologist have complied with requests for medical records. 3 down, 8 to go. It's been over 2 months for some of them. So frustrating, were it my son I would be hunting humans.

[bubbalicious]

People who irritate me.

Those who don't seek help for their kids and judge me as a mom and my kids. So they ask for information and my experience and then purposely isolate my kid and their kid doesn't get help.

[Deleted]

So sorry luvboston, and mrsbuttinski. Sounds like a user bubbalicious.

[k3am]

... if I had a dollar for the number of times I had to explain why CBD oil wasn't an option for us, I wouldn't be rich, but I'd have a nice new pair of shoes.

Because yes, we asked. And had a candid discussion with out doctor, and came to the decision that while some people have had success, it wasn't a viable option for us. And his medical degree trumps what someone read in an article online or the experience of their cousin's neighbor.

[Deleted]

So no one had to explain, I did google fecal transfer. First- ew and second, I'm not sure how relating to ASD unless they have the condition that it is used for. Not sure why that someone would bring that up. And you do not have to explain the context, but I can see why the deep breathing. OMG.

Also, googled CBD oil, yup that will totally remove tumors- not.  (except you said some people it worked for and their neighbor's cousin, so maybe a small percentage benefit.)

Alternative medicine has its place, sure, but it has been zero help (not that we tried that much) with DS because when a person needs surgery the only thing that really helps is you guessed it- the surgery that they need. I thank modern medicine especially surgical advancements all the time.

[numbbears]

I hope they get your records where they need to go luvboston and mrsbuttinski. I can't even imagine how they could lose them.

[numbbears]

Nov 17, 2016 22:46:43 GMT -5 k3am said:

... if I had a dollar for the number of times I had to explain why CBD oil wasn't an option for us, I wouldn't be rich, but I'd have a nice new pair of shoes.

Because yes, we asked. And had a candid discussion with out doctor, and came to the decision that while some people have had success, it wasn't a viable option for us. And his medical degree trumps what someone read in an article online or the experience of their cousin's neighbor.

I need this tattooed somewhere. I get so tired of people trying to sell me on essential oils to cure autism or arguing about vaccines.

[Deleted]

I have a vent. I love my mother, shes a wonderful grandmother, and she really loves my kids dearly. But she can't seem to grasp the concept of boundaries regarding my SN son's medical care. Between the sensory/behavioral challenges we are having right now with him and her automatically blaming it all on his epilepsy med, and thereby constantly asking why he needed his dosage adjusted or why we cant just try a different med (with different side effects!)...im damn near sensory overload. I cannot deal with one more person thinking their uneducated opinion is more valid than mine or my son's medical team.

Jfc, she drives me batty. And then she gets all butthurt bc "i never come to her and talk about it like a daughter should". Maybe bc this very clearly isnt your area of expertise?

[macchiatto]

Ugh. Hugs to all venters. Sorry for the exasperations!
I can understand the explaining getting old. I love the idea of cards with links to resources.

[mrsbuttinski]

Nov 18, 2016 13:51:56 GMT -5 @clarypax said:

So no one had to explain, I did google fecal transfer. First- ew and second, I'm not sure how relating to ASD unless they have the condition that it is used for. Not sure why that someone would bring that up. And you do not have to explain the context, but I can see why the deep breathing. OMG.

Alternative medicine has its place, sure, but it has been zero help (not that we tried that much) with DS because when a person needs surgery the only thing that really helps is you guessed it- the surgery that they need. I thank modern medicine especially surgical advancements all the time.

Fecal transplant (bacteriotherapy) isn't an alternative therapy. It's a real thing for certain indications. My niece used to work with a doctor who was doing studies on it when she was in grad school. 

It was initially used to help cure C. diff and other GI issues. It can be life changing. I could see where a parent with a kid who is on spectrum who belongs to the subset who present with all manner of gut issues would consider it. 

[Deleted]

I didn't mean to say it was alternative medicine. I was referring to other things in the second paragraph. I get it is used for c diff etc. I just didn't see how it relayed to ASD unless they also had GI issues which is what you said. I just didn't word it super clear.