I feel defeated.

[Laurie]

I have to get used to the idea that I'll never be able to go anywhere again if I have to take my daughter with me.   

Today she had a dental appointment and I'm home now trying to recover from the humiliation.   She cooperated with the cleaning and Xrays and I thought we were going to get out without any scene, but as we were leaving she loudly refused to wear her mask and threw it at a desk area (thankfully no one was sitting there at the time) when I was trying to help her put it on.   And then I had to make sure we could avoid the people waiting for the elevator who looked aghast at the unmasked person coming in their direction.

I have no idea how to deal with this.  She's 23 and has high functioning autism...and is the most stubborn person I have ever known.   I've explained the virus and the need for masks, etc. But she doesn't care about protecting herself and others.  She doesn't care that masks are required.  She sees that my husband, son, and I all wear masks without grumbling.   And she still refuses to wear one for even a short amount of time.  (I have given her many types of masks to try, so it isn't that.)

As soon as we got home she put on her pajamas and went back to bed.  (It wasn't an early morning appointment that required her to get up at the crack of dawn or anything like that either!)

I wonder if they'll even want to see her again in 6 months?   I'm just thankful she didn't hurt anyone or break anything.  The mask was disposable so it doesn't matter that she ripped off the ear loops.   That's the only "bright side"  I can see right now.   It's awful to feel lonely and isolated, but it's better to stay home and feel this way rather than adding in the humiliation that comes from going out in public with her.

 

 

 

[TCB]

I’m so sorry. That must be hard. Gentle hugs to you.

[JustEm]

I'm sorry.  That seems really hard to deal with.

[prairiewindmomma]

Her autism showed clearly today.

It happens.

Hugs.

Have you disclosed to the office that she's got a diagnosis? If not, come clean and explain why today resulted in a mini-meltdown.

She made it through a cleaning. Count your successes. 

ETA: We have had epic meltdowns in public. Epic.  I think it is always much harder on us. I truly am sympathetic.  I really urge you to move past the shame.  I know how deeply it can cut.  I'd say it's easier with visible disabilities but even when I've had kids in wheelchairs, you still feel all of the "judging eyes" when behavior doesn't conform.  It's ok, truly.  I'm pretty dang sure that your dentist and staff understood and felt for you, even if it was awkward for everyone in the moment.  Trust me that they've probably seen way worse.

Edited January 14, 2021 by prairiewindmomma

[ktgrok]

Ugh, I get it. 

I know you know this, but as a reminder, dental work is SO SO SO hard for those on the spectrum. Personal space invasion plus sensory overload and it is miserable. She probably just ran out of the ability to cope with any more sensory stuff and didn't know how to say that. And the mask was a sensory thing - on step too far. I'm so sorry. 

[Scarlett]

Yes for sure the office needs to be aware of her diagnosis.  

I am sorry though.  That sounds like a rough day.  When a 2 year old does it at least people give mostly sympathy.  (((Laurie)))

[popmom]

@ktgrokthat is what I was thinking.

@Laurie I'm really sorry. I can really identify with that defeated feeling. It's so, so hard sometimes. 

Edited January 14, 2021 by popmom

[Spryte]

I’m so sorry it was a bad day.  Some days are like that.  
 

There will be better days again.  Hugs!

 

 

[Kassia]

I'm very sorry.  My neighbors have a similar situation with their adult daughter and I can't imagine how difficult some days are.  Sending big hugs.

 

 

[fraidycat]

Hugs. That must be so hard.

[Ellie]

((((Laurie)))))

Is there any respite care available in your community?

[klmama]

((Laurie))

No matter how she chooses to behave, you're a good mom.  

 

[Melissa in Australia]

Hugs

 

I get the shame. We have had some awfully embarrassing to me public moments with my twins. I have had random strangers tell me off for being such a failure of a mother.

If only they knew

[ktgrok]

6 minutes ago, klmama said:

((Laurie))

No matter how she chooses to behave, you're a good mom.  

 

This!!!!!! 

It is so easy to internalize it. I wish people were as smart as Klmama and said this to me when my ASD kid or PANDAS kid was being unreasonable in public. 

[City Mouse]

I am sorry that you had such a bad day. 
hopefully, by the time she needs to go back, maybe the pandemic will have passed. Could you ask to have her scheduled for the last appointment of the day so that it will be less likely to see the general public? The medical staff should be able to handle being around her outbursts.

Edited January 14, 2021 by City Mouse

[MercyA]

I am so sorry, Laurie. Tomorrow will be better. 

[Ausmumof3]

That sounds so frustrating.  I’m sorry.

If you didn’t already, I think for any future appointments I’d preempt by explaining her diagnosis and what has happened in the past so they don’t just assume she’s a rude anti masker or something.  And then they will be prepared/expecting it instead of taken by surprise.  

[TheReader]

(((((hugs))))

I'm so very sorry. 

I've had moments like that; they suck.  

[gardenmom5]

Hugs.

Have you heard of Pathalogical Demand Avoidance?  (it is a sub-type of Autism spectrum.)  It is recognized in the UK, not in the US.    There's a FB group for PDA.  Everyone there can relate to your day.  At worst - you know you're not alone.

are you familiar with Aspergers Experts?  They're all aspies.  They refer to something similar they call "Deep in Defense mode".  They have stratigies/suggestions/classes/etc. for parents in how to help (they're enrolling today for this session of their 'accountability' plan on how to hold an aspie accountable -without causing all the issues most "professionals" do because they really don't understand aspies.  (I've dealt with a lot of idiot professionals over the years.).   They've helped a lot of kids over the years to get out of defense mode.

a couple things they've found helpful (the list is longer) in reducing the anxiety (acting out like this can come from anxiety) is stimulating the vagas nerve (low vagal tone), pressure points.

1dd was diagnoses as an adult - after years of trying to figure out what was going on.  She swears by somatic therapy.  (one of AE's recommended therapies.)  We can all see how much she has blossomed since she started it.

 

eta: I'm referring to idiot professionals whose specialties have them working directly with aspies, because they're aspies.  

Edited January 15, 2021 by gardenmom5

[Ali in OR]

I'm sorry it was a rough day. My disabled dd can't mask--she's able to take it off, there's no way to make her understand why it's needed, and she'd rather not wear it. And the end result is that she doesn't go anywhere these days. Our pediatric dentist used to schedule her at lunch when no one else was there and it took 3 of us to hold her so her teeth could be cleaned, and she screamed most of that time. But they were awesome about it. And when she aged out of that practice (she's also 23), my dentist was great about taking her on. I explained that the goal was to get in and out as quickly as possible and just do what we can do that day. She has not been since Covid.

Remember to get out on your own--you don't need to take her everywhere. As an adult, my dd qualifies for more respite hours than I can use. And on a really rough day, remember to have some ice cream. For you.

[Teaching3bears]

(((Hugs))). I have two low-functioning teens who would rip a mask off immediately so we have only been to outdoor places since March.  Not only would they not wear masks but they touch everything, including people.  I understand humiliation.  I have some pretty shocking stories.  I have learned to apologize and forget.  It is hard the day of but it will get better with time.  You could call the office to apologize if you want.  I have found most people very kind and understanding.

And I really understand isolation and that’s harder to deal with.

 

[Laurie]

Thank you all so much for your kindness and good advice and suggestions.   I will definitely be re-reading all of your replies.  For now, I'm trying to get over today.   I try so hard to anticipate and prepare for anything that could possibly go wrong to try to avoid problems, and it's draining when stuff happens anyway.   And I know it was a hard day for my daughter, too.  She slept for about 2 hours, and the rest of the afternoon she's been slapping herself in the face.  (This is one of several familiar tics she has...I think she might also have Tourette syndrome and she has a referral to a dr. at the adult autism clinic but after doing all the paperwork/intake stuff we're still waiting for an appointment a year and a half later.) 

I have to say that our dentist and her staff are wonderful, kind, caring people.   They know her diagnosis, and have cared for her for at least 20 years.  That's why I'm worried...she is a pediatric dentist and could have kicked us out by now just because of my dd's age.  My son (also on the spectrum) was ready/able to leave the pediatric practice,  but my dd is more challenging and I've been so happy that they've continued to treat her.  But I don't want my dd to scare the little ones either since they belong there and my dd at this age really doesn't.   At least there weren't other patients in the reception area  when it happened since they're being really careful about social distancing and not having people sitting around waiting, but my dd was loud so I'm sure she could be heard in the treatment area before I could usher her out of the office.  

 

[PeterPan]

4 hours ago, Laurie said:

 She cooperated with the cleaning and Xrays and I thought we were going to get out without any scene, but as we were leaving she loudly refused to wear her mask and threw it at a desk area

Sounds like she did really well and then was overwhelmed and DONE. Our state has exclusions for autism and your office should think zero of the fact that it happened. She has autism and she did a hard thing and was maxed out.

4 hours ago, Laurie said:

trying to recover from the humiliation.

I'd like to offer *gently* a twist on this. Instead of thinking of it as humiliation (which is social thinking, caring what they think, when really it's not about what they think), you might consider the STRESS this causes you and what you need to do to release STRESS. There are techniques for this, and maybe you could benefit from a counselor who does stress release techniques. 

For instance

 

2 hours ago, Ali in OR said:

respite hours

This is such a good point. Does she qualify with your state or county? Our funding is clearly not as high as in Oregon, because here the county level funding would get you very few hours of respite comparatively (maybe 30). Some counties in our state are much higher funding. There's medicaid and the waivers too. 

 

4 hours ago, Laurie said:

And she still refuses to wear one for even a short amount of time.

It's exceptionally stressful. I was in one for stretches today, and I about had a flipout moment (scream, rip it off, hyperventilate) even though I'm a rational independently functional adult. Your dd is clearly level 2 or 3 support, and she doesn't have the tools to get there. In our state, she would not legally be compelled to wear masks. She could be compelled by *businesses* yes, but not by the mandate. And most people I know with spectrum themselves or in kids have had their stress go OFF THE CHARTS with covid. Is she on an anxiety med? If she's not, you could consider getting one and see if that lowers the oppositional behavior and eventually improves her ability to wear a mask. Anxiety increases oppositional behaviors. ANXIETY will increase opposition. 

Take care of yourself. I'm sorry it was a hard day. Btdt. Sometimes there are bad days and then they end well. Maybe try to "make it better" the last little bit with a tiny bit of good. Watch a show for yourself, do a body scan, schedule something you'll enjoy, light a candle, go look for a star that can be your star. The stars are free, so they're ideal.

[PeterPan]

Just now, Laurie said:

She slept for about 2 hours, and the rest of the afternoon she's been slapping herself in the face. 

Poor dear! It was very stressful. She's seeking sensory input to calm her body. It's not a tic but a stim. There's a beanbag tapping technique she could try instead that would be safer. I'll try to find a video. 

Do you have anything with weight like a weighted blanket? If you don't and your stores are still open, you might run to Walmart and BUY A WEIGHTED BLANKET. Put it on her, see if it makes her feel good. 

Are there other sensory things that feel good to her like tight things, soft music, petting a cat, pretty christmas lights, feeling the wind outside, a massage, a hot bath, a hot tub (even better!), or heavy clay?

[PeterPan]

https://www.youtube.com/user/TheraproInc/search?query=karen+moore  Here the beanbag tapping will be in this playlist. The whole thing is good. This is an OT who works in check in mental health units helping kids get their sensory under control.

https://www.kelly-mahler.com/what-is-interoception/  Here is the reason she can't tell you what's wrong. You can do the training and buy the curriculum to do with her. It's LIFE CHANGING. You can use her nonverbal Body Check Ring. https://www.kelly-mahler.com/product/body-check-ring/  I use it with my ds and it has made a huge difference. When the person experiences big emotion, the language part of their brain SHUTS DOWN. At that point she's left with nonverbal options (throwing things, hitting, whatever) to communicate because her language has dropped.

So to improve behavior, you have to improve communication. She can't communicate what she doesn't realize. And if you think it can't work for her, try posting in the FB group for Interoception and see what people say. They've had surprising results across a variety of demographics. It takes time and you have to bring on board those language supports. Kelly does workshops with Chloe Rothchild, a young adult on the spectrum. You'll frequently see her switch to tech right in the middle of a session. She's just done and over to tech. 

But I think, just comparing your situation to my ds who does very similar things, that you're going to need an anxiety med. Once you get that, she'll be calm enough to receive the instruction and work on these things. But this is the path. Get her stabilized now with calming sensory like the weighted blanket. Get to the behavioral clinic and get anxiety meds. Get the long term interoception/self awareness/communication strategies.

My ds has been an astonishing challenge. Where you are is NOT where it has to stay. You're doing the right thing asking for help.

Edited January 15, 2021 by PeterPan

[PeterPan]

https://www.kelly-mahler.com/resources/blog/  Kelly's blog has several useful articles

https://www.kelly-mahler.com/resources/blog/5-keys-to-supporting-behavior-regulation/  Here's the link to sign up for her FREE WORKSHOP coming up on Jan 20. Don't miss this!!! Like I said, for a person on the spectrum, working on interoception (self awareness and ability to communicate and self advocate) is LIFE ALTERING. And this will be free and amazing. And Chloe will be there. I've met her at OCALICON and let's just say you're going to identify. And Chloe's disability is significant enough that this was not a fast thing, but it can happen and can improve.

You CAN get to a better place. Go to bed with that hope. 

[gardenmom5]

14 minutes ago, Laurie said:

Thank you all so much for your kindness and good advice and suggestions.   I will definitely be re-reading all of your replies.  For now, I'm trying to get over today.   

 

hot bath, lavender, ear plugs.  I like thunder storms for white noise.  go figure.

 

Aspies mask - until they physically can't anymore. It sounds like she reached her limit and melted down.    it is physiological - it's within the nervous system. 

[PeterPan]

13 minutes ago, Laurie said:

I have to say that our dentist and her staff are wonderful, kind, caring people.   They know her diagnosis, and have cared for her for at least 20 years.  That's why I'm worried...she is a pediatric dentist and could have kicked us out by now just because of my dd's age.  My son (also on the spectrum) was ready/able to leave the pediatric practice,  but my dd is more challenging and I've been so happy that they've continued to treat her.  But I don't want my dd to scare the little ones either since they belong there and my dd at this age really doesn't.   At least there weren't other patients in the reception area  when it happened since they're being really careful about social distancing and not having people sitting around waiting, but my dd was loud so I'm sure she could be heard in the treatment area before I could usher her out of the office.  

That seems like a legit worry! So I think give it time. We've had practitioners change for things, and in the moment it seemed awful and then it worked out. By driving farther, sometimes you find someone new. Like we got referred to a place that caters to SN, really caters. Like all the way with separate rooms for each person, staggered entrances by 15 minutes so people never meet, ZERO waiting. They had us fill out forms saying what he liked and they talked only about those things. It was wild, more than I ever could have thought up, lol. 

So deep breath. Whatever happens, it will be ok. If you get a suggestion to move on, it will be ok. You will work it out. If you pray, it's a time to pray. But it will be ok.

And I think, this is just a thought, that it might be a sign that it's a time anyway. It was going to have to happen, so maybe just start asking around, kwim? Like investigate it yourself and see what could open up. 

Also, I think that in 6 months when she goes again (it will be 6, yes?) we could be a lot lower stress. Maybe some places will even be close to dropping mask mandates. If these vaccines get distributed, it could happen! So I wouldn't assume how it was this time is how it will be in 6 months. And, I'll just very quietly say this, but you may find if you ask around that there are dentists not requiring masks of kids on the spectrum. Just network. I'm just saying network. 

And you're getting her into behavioral health, which will get her access to anxiety meds. For my ds the anxiety meds have been RADICAL in changing behavior. He used to be under tables, so so hard to work with! Now with the meds, he can do sessions. He's stressed and tired, but he can get through them and hold it in. And we're going to try a pdoc and see if we can tweak and get it better. But yeah, a stupid $10 a month anxiety med and he's like oh yeah I've got this. Seriously. He takes it and 20 minutes later he's like who me I was throwing things and in the closet? Hahaha. 

I know it's hard. 

[PeterPan]

2 minutes ago, gardenmom5 said:

lavender

Walmart sells a tincture that has lavender and I forget what else, maybe chamomile? It's in their pharmacy section with the motion sickness stuff. It's called MOTION EASE. It's like $4 and it's AWESOME. You can dab it on her ears (per the instructions). Let her sniff it first obviously to see if she likes it. It would pair well with the weighted blanket. They also sell lavender bath salts. 

Walmart is your friend. That inexpensive weighted blanket they sell KICKS BUTT. I have one my dd got me and one I made and another she bought ds. But really, for the money, the walmart one is't bad! Ds wets the bed, so I've washed it umpteen times. At first I was afraid the stupid thing was gonna fling GLASS BEADS everywhere, haha, but it hasn't yet.

[PeterPan]

https://www.walmart.com/ip/Motioneaze-Motion-Sickness-Relief-Topical-Oil-08-fl-oz-20-application/12346124  I lied, it's $5.44. And you can walk in and have it tonight. I really like it myself.

https://www.walmart.com/ip/Tranquility-Temperature-Balancing-Weighted-Blanket-with-Washable-Cover-20-lbs/404054935?selected=true  This blanket comes in different weights. They say to go for 10% of body weight, but that's really personal. If you buy a 12 pound and she's slight, you can fold it over to double the effect. 

Edited January 15, 2021 by PeterPan

[Ottakee]

So sorry.   Afraid I have been there, done that before    4 years ago my 25 dd had 10 hours if under full sedation dentistry as that was the only way they could do the work.   I had to drive 3 hours away to have it done.

Last week....she had an extraction done locally with no Ativan and just the nitrous.   This new office is amazing....and lets her take her bearded dragon with her....yes, the live animal kind.

When her stress level is high she can become very combative/violent bit is generally very very good.....until she isn't.

Ativan helps.   The promise of fast food of her choice after the dentist helps.

It is just so hard as that mom when 20 years later you still have toddler behaviors in public 

[PeterPan]

2 minutes ago, Ottakee said:

and lets her take her bearded dragon with her.

Ok, that's awesome.

2 minutes ago, Ottakee said:

Ativan helps. 

I need to look this up. I want the pdoc to give us something that has hang time, thing one, and something to use for occasional increased stresses, thing two. The solution for all the time is not the solution for those special moments, or he'd be a zombie. But he definitely needs that occasional booster. 

Is there any other advice on what to ask the pdoc for? That could apply to op and me. 

[prairiewindmomma]

Things we do to survive the dentist in our family:

kid wears a soft blanket topped with a lead apron (the same one they do for xrays) as a type of weighted blanket

sunglasses

earplugs

preferred movie on video

breaks

and when really desperate...either Ativan beforehand or a touch of nitrous. (Don’t do nitrous if you have known methyl issues!)

Our dentists and doctors for one of our kids are all sped parents themselves. Finding the right chemistry is so important. 
 

Hugs, mama. I agree she is likely stimming. Poor thing!!

[PeterPan]

1 minute ago, prairiewindmomma said:

kid wears a soft blanket topped with a lead apron (the same one they do for xrays) as a type of weighted blanket

Yes yes!! The very wow dentist in the city has different kinds of weighted blankets and lead aprons and was like hey let's try this. Ds was SO chilled, lol.

2 minutes ago, prairiewindmomma said:

Ativan beforehand

Ok, tell me about this. Is it ok for your high aggression kids? Does it have methyls? How long does it take to kick in? Do you have *more* short acting options like this or is that your super power one you bring out?

And do you have any advice for those of us trying pdocs soon on what to ask for? I keep mulling this in my mind, how you turn a picture you have into a series of coherent requests/problems to solve.

[prairiewindmomma]

I don’t have high aggression kids. I have anxious melter-downers (with really high mouth sensory issues).

 We have moved from done a crown under sedation in a hospital to being able to do everything in a dental chair. We have finally worked ourselves into a better place through trial and error. We have even been able to do dental molds with the stuff rather than just the digital scans. (Picking the right flavor was the linchpin, oddly.) 

Ativan...starts to work within about half an hour but really kicks in at the 60-90 minute point. It’s supposed to last six hours, but it’s been more like four. It boosts GABA by blocking NDMA receptors.

Talking with pdoc...let me give that some thought. I have had really mixed experiences.

[PeterPan]

1 minute ago, prairiewindmomma said:

Ativan...starts to work within about half an hour but really kicks in at the 60-90 minute point. It’s supposed to last six hours, but it’s been more like four. It boosts GABA by blocking NDMA receptors.

Talking with pdoc...let me give that some thought. I have had really mixed experiences.

Interesting, thanks. We did GABA one time and it was so dangerous that was a not to be repeated, lol. But I know it's super good brain chemistry for many. 

Yeah, the mixed experiences are kind of the only thing I've heard. It's why I've stayed so long with our imperfect solution, because it was better than $$$$$ wasted on a worse solution. But at this point unfortunately we're walking up to where without something with some hang time we can't stay safe. I can't get his cognitive and his chemistry to merge to where he can get to 100% safe. I've tried so hard, and I can't. And as a woman, I have to have more margin than what we have. I don't know that he'll ever have the maturity to do it without the meds. I do. I'm late and I go WOW YOU'RE A HOT MESS or someone around me says WOW YOU'RE A HOT MESS and I take something. But he's a hot mess and the language drops and it's dangerous and there's zero pulling out of that cognitively. Which is of course why his support level is 2. Sigh.

I think that's called mom guilt. I'm going to fry his liver because I can't make everything perfect. But my goal is to keep him out of jail and hell. I really need to do like Mark Lowry says and cross the street on that, haha. If I just had a nice Reformed streak and would change churches, then I could believe he's covenantally predestined and it's all gonna work out and be fine. That would be some seriously nice theology, just saying. I could look for a church like that and leave the Baptist half and half arminian/calvinist you screwed up so your kid is in hell, hahaha. 

[prairiewindmomma]

I have no problems with modern medicine.

I take methotrexate which fries my liver (have to get labs every 3 months) but it also keep me out of a wheelchair. Sometimes you just choose the best of two bad options—there is no consequence free “out”. Sounds like you are living that—aggression is not ok.

My advice:

1. Get outside people working with your kids who can do surveys and answer questions for pdocs as outside observers. Some pdocs don’t believe moms know anything. Having met some really ineffective/bad reporters over the years, I get that that can be an issue, but that’s not me.

2. Bring documentation to the table. Even if it’s just here’s the issue, here is what we have tried—this worked, this didn’t work, but this bit of behavior remains. Have a list of specific things you want addressed. 
 

3. don’t put up with people who blow you off. Ask to see sample reports up front. Get word of mouth recommendations. Be willing to drive.

 

[PeterPan]

13 minutes ago, prairiewindmomma said:

I have no problems with modern medicine.

I take methotrexate which fries my liver (have to get labs every 3 months) but it also keep me out of a wheelchair. Sometimes you just choose the best of two bad options—there is no consequence free “out”. Sounds like you are living that—aggression is not ok.

My advice:

1. Get outside people working with your kids who can do surveys and answer questions for pdocs as outside observers. Some pdocs don’t believe moms know anything. Having met some really ineffective/bad reporters over the years, I get that that can be an issue, but that’s not me.

2. Bring documentation to the table. Even if it’s just here’s the issue, here is what we have tried—this worked, this didn’t work, but this bit of behavior remains. Have a list of specific things you want addressed. 
 

3. don’t put up with people who blow you off. Ask to see sample reports up front. Get word of mouth recommendations. Be willing to drive.

 

Ok, that's a serious list. Like you, we've had issues with the forms being filled out by people. They don't see him *enough* to see what I see. They might see him in the setting and not on the way there or the way back. Most of those forms assume a school setting where the person sees the dc for 3-4 hour stretches or at least consistently enough to get the flow. I've gotten really burnt with having people who don't see him enough fill out forms.

On the documentation thing, can I rabbit that a minute? Would you *baseline* a kid who has been aggressive? See here's the problem. He has been on the stuff I'm giving him for three years now and the anxiety med for a while. So I've got side effects from the anxiety med and side effects from the supplements. I don't know how I create documentation/behavior logs that accurately reflect his native state without endangering myself. Even missing half a day of something is really, really scary and results in property damage.

But yeah, I keep thinking this through in my mind. So you're saying it's spot on to have a hit list. And I think that's my hit list, something stabilizing with hang time (so he's safe even if he misses a dose, which I know can be done) and something for occasional use for upsetting/stressful/whatever situations. 

And no, it had not occurred to me the pdoc would be donkey's anatomy. They're spending 90 minutes with us at a consistent intake slot they keep. Is that a pretty normal intake or especially generous? Yes, I got a recommendation through some local people in the field to use a major hospital many hours away. I don't think our state allows pdoc services out of state. They said we couldn't even be *on vacation* (doing tele) or temporarily in another state, that we literally have to be IN THE STATE where the doctor is. But I was told this hospital has had some pdocs do good things and give more effective thought out answers for complex situations. So we'll see. It's a total crap shoot. 

But you're right, it had not occurred to me the pdoc would be disrespectful. If they are, even after I pay some obscene amount for a 90 minute appointment, I'll probably cry and then spit and find someone else. It's a woman, so maybe that will help?

We're doing this by tele, so that helps. I mean, not that we're thankful for Covid, but I'm definitely thankful we can finally do things by tele. But really, I should take him there. She'd sort him out in a hot minute if we did that. What do you think? It's merely a convenience that it's tele. Would things actually sort out better if we went in person and she was in the room with him for 90 minutes? Or would it be harder? Do they actually want to talk with him or me? If going up would be better, we'll work it out. Nothing like a nice like drive into winter weather, lol. But if it would be BETTER we'd do it. If it doesn't matter, if she doesn't really need to feel his presence and see how he rolls to sort it out, then it doesn't matter. What do you think?

Edited January 15, 2021 by PeterPan

[PeterPan]

And then @prairiewindmomma if I were going in person, would I baseline him? It would be hard to do. The most I might be able to do is take a hotel and go up a day early and keep him off one day then take him in the next day. I probably couldn't even get him in the car without the meds and supplements. Btdt. 

And for op, sorry to divert your thread. Maybe it's partially interesting. 

[PeterPan]

17 minutes ago, prairiewindmomma said:

Sometimes you just choose the best of two bad options—there is no consequence free “out”.

Yup, that's it. There is no choice that has zero consequences. 

I hope that he doesn't hate the side effects or how he feels on the meds. But on the other hand, my dd tells me he doesn't like how he feels NOW. He can't tell us that, but I thought it was such a strong observation. No one wants to wake up grouchy and not feeling balanced. They want to feel well and like they can make choices and do things. 

So we'll see. Hard stuff. I had someone recently tell me a problem (which the other person and I shared) was SO HARD and I'm like dude, you ain't done hard. I think I've gotten kind of calloused by it over the years. I like to think that I used to be kind of nice, and now I'm just stoic. The eval today was posterior tongue tie (which I guess could be another thread) and if we have to do it it involves crazy follow up every three hours. And I'm like fine, one more thing, we do what we need to do. Maybe we're NUMB at this point. Maybe that's why I cruise, to get back my feeling...

[Anne]

5 hours ago, Melissa in Australia said:

Hugs

 

I get the shame. We have had some awfully embarrassing to me public moments with my twins. I have had random strangers tell me off for being such a failure of a mother.

If only they knew

I’m sorry, Melissa - that’s just awful!!  Good thing their Hive Aunties weren’t there - those strangers would have been REALLY sorry!!!  

[prairiewindmomma]

Can I be really blunt, PeterPan, because we’re coming up on a decade of posting with each other?

I had the experience recently of watching some video of my late daughter. At that point she was deaf, blind and wheelchair bound. The shock wasn’t so much in seeing her in that state, it was in watching me. I had completely lost my perspective because I was so deep in the weeds of daily living. I had four kids 6 and under, all in diapers still. Three were SN, and then there was my baby who I was breastfeeding and babywearing 18 hours a day while doing the rest. I had taken on WAY too much by myself and I thought at the time things were mostly fine.

I hear you describe things that are so not okay in the rest of the world, even the SN world. A good day should not involve minor property damage. And your bad days sound bad. Like, public school would’ve implemented the safety plan bad. 
 

If I were going in to meet a pdoc, if you don’t think you can get fair outside reports, then you bring photos of the holes of the drywall and everything else...video, whatever, and you show that. And talk about your real fears of needing to get things under control or he will be in jail. Like, be OPEN. Moms tend to say everything is ok when it is not ok.

I would also ask the nurse or receptionist to ask the doctor if she wants to see him with the supplements he is on now, that do help, or if she wants to see him in his natural state. And then, if they want natural state, ask what safe space options they have...and be blunt about the behaviors you might have pop up. Phone video is also your friend.

My ped pdoc friend recommends bringing the crazy, fwiw. 

[PeterPan]

1 hour ago, prairiewindmomma said:

bring photos

2 hours ago, prairiewindmomma said:

Phone video

Ok I think I forgot about photos and video. You're right, when we were first doing all this years ago I did a LOT of documentation that way. I can do that. 

2 hours ago, prairiewindmomma said:

Like, be OPEN. Moms tend to say everything is ok when it is not ok.

I think I may have gotten into "this person will be so expert they'll read my mind" mode. I'm getting it now.

2 hours ago, prairiewindmomma said:

I would also ask the nurse or receptionist to ask the doctor if she wants to see him with the supplements he is on now, that do help, or if she wants to see him in his natural state. And then, if they want natural state, ask what safe space options they have...and be blunt about the behaviors you might have pop up.

So thinking about this some more, I could baseline him all the way to nothing (no calcium, no D, no 5HTP, no prescription anxiety med, nothing), or I could baseline him to a healthful supplement level I'd like him to be at, like some calcium, D, some 5HTP, etc. but no buspar and nothing therefor to counteract the buspar side effects. I could do one of those options for one week and make data then take him to the eval in person. Like you say, I could ask them which option they want and see if I can change the appt to in person.  

I think like you're saying it's too complex to expect a doctor to somehow IMAGINE what he was like before the buspar and before the increased supplements to counteract the buspar. I can't have him on the buspar without anything to pull down the aggression, and I had to have the buspar immediately because covid. People were waiting months to get care, everything was closed, I took what was available and made it work. But the mixture has side effects, and she can't just rub a ball and sort that out even though I thought she could, lol. She'd probably say to baseline and come back, which would delay. They were supposed to send me paperwork and I haven't received it. Or maybe I was to log in and print? But I thought for sure they were going to send me forms. So if I check on that, it might be this will get flagged and sorted out by them anyway.

2 hours ago, prairiewindmomma said:

My ped pdoc friend recommends bringing the crazy, fwiw. 

Hahaha.

Ok, well this has been good. I've got a hit list of 3 things to call them about. I will get that done pronto and see where we're at. I think I literally was not understanding this new genre of practitioner as was treating her like a magic ball we could rub. But really, I have to bring the data, just like the school, sigh. So I can do that. 

And yes, we've had a team, had workers in our home, on and on. Everything had to switch online in March and we ramped up hours other ways. 

Well I need to get busy and look at the calendar and figure this out. That appt is coming up and I need to do the math, see when we'd be doing this. 

[PeterPan]

3 hours ago, prairiewindmomma said:

I would also ask the nurse or receptionist

This hospital system is HUGE. It doesn't really feel personal quite yet, like you're getting the same person each time or even know who to call. But I'll figure it out. LOL

[Lecka]

I went to an autism conference years ago and one of the sessions I went to was about preventing teacher burnout.  I went as a parent and there were also other service providers, but this session was aimed more at teachers, though it applies to everyone. 

I don’t remember it all totally clearly.

But they talked about how students have a curve of getting worked up and then it just physically taking time to recover from the effects of the stress of it.  Brenda Smith Myles is  definitely an author who talks about this.

Well — there is also a curve for the person who is trying to prevent and manage the student’s behavior.

This curve is to remain really outwardly calm (or try to) while the student is at the height of their curve.  Then, when the student’s curve has come down, that is when the teacher curve shoots up. This is because it’s inherently stressful.  They talked about this, but basically, “it’s inherently stressful” is my summary.

They said it’s really important to be able to know and expect this, and I think accept it, and take steps.  They recommended things like:  talk to someone about it, purposely/intentionally do something to relieve stress, etc.  They said think about all the effort and thought put into helping the student — the person preventing, managing, etc, behavior needs that same consideration.  It’s important to acknowledge it and not feel guilty (for having a stress reaction) or like the right thing to do is “power through it.”

This goes along with the idea of stress chemicals building up until the body goes into “fight or flight.”  This happens with students.  The same stress chemicals happen with the teacher or parent, too, and also need to be ameliorated after the stressful event (by talking to someone or taking some time to do something relaxing are what I remember).  
 

Anyway — this was all really helpful to me.  
 

 

[Lecka]

This is a nice book that talks about the curve idea.  

https://www.amazon.com/High-Functioning-Autism-Difficult-Moments-Practical/dp/1942197241/ref=pd_aw_fbt_img_2/137-8703022-1192703?_encoding=UTF8&pd_rd_i=1942197241&pd_rd_r=f982b4e8-7412-4ecb-bc74-6bb802671000&pd_rd_w=yaVC8&pd_rd_wg=YQl7a&pf_rd_p=8ad921d8-8b3b-4c8e-be01-c425a146feba&pf_rd_r=0QAS6CM0907P2764XJRF&psc=1&refRID=0QAS6CM0907P2764XJRF

I have found it helpful.

A lot of it is just — these things we know apply to our kids, also apply to us, and we are going to have hard feelings too after having our own stress of trying to help our kids.  
 

And teachers etc feel guilty too or like if they were doing everything right they could have prevented something from happening.  It’s just not always possible.  I had not thought of this as being something people felt, whom I perceived to “really have everything together,” and that was really helpful to me, too.  

Edited January 15, 2021 by Lecka

[Alicia64]

16 hours ago, prairiewindmomma said:

Her autism showed clearly today.

It happens.

Hugs.

Have you disclosed to the office that she's got a diagnosis? If not, come clean and explain why today resulted in a mini-meltdown.

I agree with this 100 percent. Sending hugs too.

Wendy

[PeterPan]

5 hours ago, Lecka said:

But they talked about how students have a curve of getting worked up and then it just physically taking time to recover from the effects of the stress of it.  Brenda Smith Myles is  definitely an author who talks about this.

Well — there is also a curve for the person who is trying to prevent and manage the student’s behavior.

This curve is to remain really outwardly calm (or try to) while the student is at the height of their curve.  Then, when the student’s curve has come down, that is when the teacher curve shoots up. This is because it’s inherently stressful.  They talked about this, but basically, “it’s inherently stressful” is my summary.

They said it’s really important to be able to know and expect this, and I think accept it, and take steps.  They recommended things like:  talk to someone about it, purposely/intentionally do something to relieve stress, etc.  They said think about all the effort and thought put into helping the student — the person preventing, managing, etc, behavior needs that same consideration.  It’s important to acknowledge it and not feel guilty (for having a stress reaction) or like the right thing to do is “power through it.”

This goes along with the idea of stress chemicals building up until the body goes into “fight or flight.”  This happens with students.  The same stress chemicals happen with the teacher or parent, too, and also need to be ameliorated after the stressful event (by talking to someone or taking some time to do something relaxing are what I remember).  

Yes!!! It's why the counselor suggested I CONTINUE to do the TRE exercises, because it was a way to release the physiologic effect. We had a worker who was also doing her student teaching and she had some episodes at the autism school. It totally changed her, and I think it's because she was young and didn't have anyone helping her to let that go. 

4 hours ago, Lecka said:

This is a nice book that talks about the curve idea.  

https://www.amazon.com/High-Functioning-Autism-Difficult-Moments-Practical/dp/1942197241/ref=pd_aw_fbt_img_2/137-8703022-1192703?_encoding=UTF8&pd_rd_i=1942197241&pd_rd_r=f982b4e8-7412-4ecb-bc74-6bb802671000&pd_rd_w=yaVC8&pd_rd_wg=YQl7a&pf_rd_p=8ad921d8-8b3b-4c8e-be01-c425a146feba&pf_rd_r=0QAS6CM0907P2764XJRF&psc=1&refRID=0QAS6CM0907P2764XJRF

I have found it helpful.

I have that book and rediscovered it buried on a counter in my bath. I think I had taken it in thinking I would read it, and then didn't get it done. For op, it's very thin, not a time consuming read. 

[PeterPan]

11 hours ago, prairiewindmomma said:

I would also ask the nurse or receptionist to ask the doctor if she wants to see him with the supplements he is on now, that do help, or if she wants to see him in his natural state.

I'm back! I called the hospital and talked it through with the receptionist for the pdoc. She said right now they are doing almost nothing in person, that it's all tele. She said *not* to baseline him but to *continue* what we're doing (since it includes things prescribed by a doctor) and let the pdoc sort it out herself and make that call. And it sorta makes sense. Once doctor is not going to say drop what another doctor prescribed unless they've actually had an appointment. 

So whether she's right or wrong, I'm just gonna do what the receptionist said. She seemed to be thinking it through very carefully and was not a young chicken. She also seemed very respectful of the pdoc and wanting to let the pdoc sort things out. So we'll see, but it's a safe good plan for us and drops my worries. 

Well good, back to op's concerns. 

[dsmith]

I'm sorry and completely understand. When ds was younger we had many unpleasant situations that left me feeling mortified. Thankfully he has made a lot of progress in the last few years and these situations are rare or happen at home away from the general public. Now he is more afraid of the virus and would wear a mask if we could get him to go out, but he won't even get in the car for a ride. (He will go out for the vaccine though - he can't wait for that even though he hates injections.) If the pandemic happened 10 -15 years ago we would have never been able to get him to wear a mask - he had many sensory issues in the mouth/face/neck area.

We started using social stories with good results when we were doing things or going places that would set him off. I think they are different for older kids/adults but I did see this resource in a quick search: https://www.autismresourcecentral.org/social-stories-for-young-and-old-on-covid-19/. This one may be too young feeling, but I liked the idea about decorating the mask: https://www.autismresourcecentral.org/social-stories-for-young-and-old-on-covid-19/ When we knew something was coming up I would create a social story just for that, and we would read it often before the event. It helped more than I thought it would.