I feel defeated.

[gardenmom5]

17 hours ago, prairiewindmomma said:

 

My ped pdoc friend recommends bringing the crazy, fwiw. 

I'd started dudeling with a DAN! ND six months before I finally got him in to be evaluated a the University's child development clinic.  He was showing improvement under her care (I'm so grateful to finally have insurance that covers her again after a three year break - she is literally the ONLY provider who has made lasting improvement with him.).

Anyway - I wanted them to *see* him.  no sups.  I took him off everything two weeks before his evaluations started.  2dd was in her first year of pham school, and living at home.   Every week, in one class or another, she heard what a rip-off the supplement industry is.   She was the first one to break and ask "when are you putting him back on his supplements!?!?!??"

[Laurie]

22 hours ago, gardenmom5 said:

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.  

I'm going to spend some time this weekend looking into these resources.  The vagas nerve /pressure points sounds interesting, and it looks like there are some exercise demonstrations on youtube.  

I wonder if somatic therapy is similar to the interoception resources that Peter Pan has been recommending?

 

[Laurie]

22 hours ago, happysmileylady said:

 

I have a couple of suggestions, if I may.

First, consider some alternative mask solutions.  It's winter time, will she wear a scarf?  Not sure what part of the country you are in but if you aren't in an area where it's warm, a scarf could function as an alternate and it could be "marketed" to her as being about keeping warm.  Or, a ski mask?

 

Or, is there a particular issue with the type of mask?  Perhaps a different fabric, or some ties in the back instead of ear loops.  Or maybe a gaiter style mask?  There is evidence that those can be just as effective as other types.  ETA, realized you already addressed that one.  

Or maybe have her help you pick out a fancy cool mask?  Something with sequins or fringe or something else that she might find appealing that doesn't affect the functioning.  I have seen character masks that have little "ears" that hang off the side, etc etc.

 

Would she wear a face shield?  Perhaps not as effective as a mask, but it might stop both the drama, and the staring eyes from other people.  

 

Thank you for the ideas.  I saw some fancy masks online recently with sparkly things that might appeal to her since she says she wants to be a princess.  Maybe I should've ordered them, but I wasn't sure how how they would hold up.  I've been handwashing our cloth masks so maybe something sparkly would work.   I have two different types of face shields, but unfortunately she won't wear either of them.  And since yesterday wasn't the first time she's thrown a mask it's probably best to give her the lightest face covering possible since it may fly if I'm not fast enough.  

[Laurie]

20 hours ago, PeterPan said:

 

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?

I bought her a weighted blanket many years ago and she won't use it.  Even the cute kittens on it don't make her want to use it.  

She's a tough one to figure out.  We have a variety of things like body pillows, a massage chair, even an exercise thing that you sit on and it moves like a horse, but she won't use any of them.  And it's funny that you mention Christmas lights...not "funny" actually...since she broke a tabletop ceramic tree this year by pulling the plug out of the wall sideways (and the plug broke) because she didn't like the lights.   

I often feel like she DOESN'T want to be pleased with anything.   (And unfortunately this describes my late mother-in-law, too.)

[Laurie]

12 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.

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.  

My copy is supposed to arrive tomorrow.  Thank you for suggesting it!

[Laurie]

2 hours ago, dsmith said:

 

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. 

When my kids were younger I used children's books to help prepare them for visits to the dentist or doctor.   Now, I'm afraid to give my daughter advance notice about going to the dentist because she's hidden her shoes and been difficult about it ahead of time.   Instead, I tell her in the morning that we're going in for her check-up,  and I make morning appointments so she doesn't have too long to anticipate it.   Maybe I need to do more after the appointment, like a debriefing, but yesterday I didn't even want to talk about the incident after we got home.   I had already pointed out to her that the people there are always so nice to her and go out of their way to try to make her comfortable, etc. so she knew what I thought of her behavior before we got home.   

[prairiewindmomma]

10 minutes ago, Laurie said:

I had already pointed out to her that the people there are always so nice to her and go out of their way to try to make her comfortable, etc. so she knew what I thought of her behavior before we got home.   

This sounds like shaming. I suspect she already knew her behavior was not what it should have been. 
 

Does she have the words to talk about what went wrong for her? “You did so well during the cleaning but it seems like you started to struggle at the end. You didn’t want to wear your mask again. What were you feeling? What were you thinking? Is there something we could try to fix so it isn’t so hard next time?”

[PeterPan]

48 minutes ago, Laurie said:

I often feel like she DOESN'T want to be pleased with anything. 

 It sounds like you're making the right move getting her some care to see if they can get the mood stabilized and up a bit. You might find at that point the person you thought was in there who couldn't show.

[Xahm]

I haven't been in your position, but I'm so sorry you felt judged. I've been the onlooker in situations like that, wishing I had a way to help out or words of wisdom to share. There are judging jerks out there, but if you can, take heart that those watching are very often not judging you but silently cheering you on. 

[PeterPan]

15 minutes ago, prairiewindmomma said:

Does she have the words to talk about what went wrong for her?

I'll just point out for op that asking her to TALK about what happened may SET HER OFF again. It definitely would my ds. If she had very strong emotions and you dredge it back up, expect more behaviors.

29 minutes ago, Laurie said:

Now, I'm afraid to give my daughter advance notice about going to the dentist because she's hidden her shoes and been difficult about it ahead of time. 

That's a lot of anxiety. And I get why you're doing it (btdt) but the goal would be to get the anxiety down so she can handle it. It also may tell you that she's not as comfortable there as you think she is.

How far out is that clinic appointment? Will they be connecting you with a pdoc for meds? 

[dsmith]

On 1/15/2021 at 6:29 PM, Laurie said:

When my kids were younger I used children's books to help prepare them for visits to the dentist or doctor.   Now, I'm afraid to give my daughter advance notice about going to the dentist because she's hidden her shoes and been difficult about it ahead of time.   Instead, I tell her in the morning that we're going in for her check-up,  and I make morning appointments so she doesn't have too long to anticipate it.   Maybe I need to do more after the appointment, like a debriefing, but yesterday I didn't even want to talk about the incident after we got home.   I had already pointed out to her that the people there are always so nice to her and go out of their way to try to make her comfortable, etc. so she knew what I thought of her behavior before we got home.   

That's rough. It just goes to show how different each person on the spectrum is. My son wouldn't budge if we told him that day. He needs advance notice of anything that may set him off. My son has made a lot of progress, but there are certain situations that are still major problems for him. His doctor has decided the best option for him in that situation is Xanax. I wasn't crazy about the idea - for myself personally I feel like the less drugs the better, but I have had to come to terms with the fact that he will need some serious medications for the rest of his life. The Xanax helps, but it's hard to get him to take it in the middle of a meltdown. I will generally give it to him if I feel he's going to have a problem with whatever has to be done, and he is learning to recognize when he needs to take it. (I'm not saying medications are the answer for your daughter, just sharing our experience.) I have to say that when he does have the occasional major issue it is a bit scarier at 22 years old than it was at 7 years old. The last time it happened in public was at a crowded steakhouse and it was absolutely awful, so I totally understand how you feel. {{{{hugs}}}}

[PeterPan]

35 minutes ago, dsmith said:

My son wouldn't budge if we told him that day. He needs advance notice of anything that may set him off. My son has made a lot of progress, but there are certain situations that are still major problems for him. His doctor has decided the best option for him in that situation is

I've done it both ways. When my ds was younger, we did *not* tell him because he was easier to wrangle with just the immediate shock, before he could process and clam up. But as we got his anxiety under control (with supports, with meds) it became more strategic to tell him ahead and prethink and give him warning. 

So I think waiting is probably *strategic* and a clue that the anxiety is pretty significant and needs to be addressed. The people I know who continue not to tell their teens/young adults ahead are usually working around untreated anxiety. So I don't fault them, but it's a clue. I don't think it's where we want anyone to end up permanently. We'd all like to be working toward collaboration and low enough anxiety that they can participate in the plans for their life.