SPD sigh....

[Dmmetler]

DD13 had her first cheer competition for the new team this past weekend. The uniform is different for senior teams, as is the hair and makeup, and that already had her on edge, as did just plain a team at a higher level. (She had just gotten her uniform top the day before, so it wasn’f Like she had had a chance to get used to it, and I didn’t know how to do the hair to practice it. We’ll be working with both over the next weeks).  The girls ended up waiting an hour past their meet time in the lobby waiting for everyone to get there (after which the coach took them outside, specifically so they could stretch, etc somewhere quieter) and she was getting more and more anxious, close to a panic attack, but holding it together, somehow, unable really to talk to anyone. I could see she was strained and struggling under the load, and she was trying hard to recenter herself. She made it through the routine, did well, and, pretty much as soon as she was off the mat, teared up. She was so overloaded that all it took was one comment to send her over the edge, and of course, one of the team moms did exactly that “no crying-ypu’re on a senior team now”. They had had a few bobbles, but if it had been perfect, she still would have still been in the same state. It wasn’t that they hadn’t done as well as she’d wanted-it was that it was just too much.  I think her coach understood, and so did many of her teammates.  Fortunately, one of the other moms texted me, and I was able to pull her back and let her get away and calmer (and bring her backpack that had some of her sensory stuff in it, and provide some deep pressure, etc. I know there were comments on babying her, etc. (although her coach from last year commented that she was impressed at how well DD was doing, because she knows DD well enough to know just how on a thread DD was). She made it through awards. 

  

I’m proud of her, but so frustrated. She wants to do this, she loves the sport, and it has honestly been one of the best things for her sensory issues because she pushes herself on it daily. But this isb’t the first time that she’s had to get through on sheer guts alone, only to get sneered at for her efforts by folks who don’t get just how HARD it is for her to do this.

  

 I’m going to try to put together a mini kit she can keep with her that, if it gets lost, is no big deal. One of her coaches from last year is also a mom on the team, so can go out on the floor, and hopefully she’ll be willing to hold it along with the epipens and inhalers-because, honestly, it’s probably just as important. And I do know that next time will be easier, because it won’t be the first (and is a less stressful venue-entering this one is like going on a flight ). But it’s still so frustrating to see her go through this. 

[PeterPan]

It sounds like you've done an AMAZING job of opening doors for her, doing the pre-work ahead, etc. Are you sometimes there and sometimes not? It might have been that for the first time or two increasing supports by having you be there would have been helpful. Is she willing to go back or is she wanting to quit? 

She's 13, yes? Have you considered counseling? For her, not you, lol. I think the idea of a mini kit is GREAT, but really that falls back to her. Not so much as an EF thing, because it's ok need help with EF. But because she's getting older, she needs self-advocacy skills. There are also psychs, OTs, etc. doing interoception work, and going through that would pair really well with self-advocacy work with a psych. Could be all the same person or two different practitioners.

I know that sounds weird, because she's so functional and doesn't have a lot of labels and all. I'm just suggesting, from our experience, that teens are a really good time to STEP UP the level of intervention. I've used a psych with both my kids for this, and my ds with more significant issues is going to be there a long time. It has nothing to do with IQ or the label and everything to do with people with high ability needing a high level of meta-cognitive to bring to their situations. 

She's at an age too where, to me, she oughta be able to do some smackdowns. Like if a very young dc confronts an adult, it can come across wrong. But if a really cogent, bright teenager stands up for themselves and challenges an adult and self-advocates, that's really appropriate. 

You also might consider freshening her evals, if it has been a while, because there's a difference between "babying" someone and PROVIDING APPROPRIATE SUPPORT. Having currently appropriate terms for her challenges lets her do that. And it might be that a psych who would do her evals and get to know her would then be the appropriate person to do the counseling. It's just something to look for. Then it's not so much about the DSM terms as it is about more skills and strategies. 

Fwiw, those sessions are really flexible and appropriate to the kid. With my ds, the psych plays games and helps ds work on the target skills as he gets into pickles. So they're totally just playing things he wants to play, but she's working on highlighting her goals. With my dd, it was more this intellectual problem solving, where dd went in and said this is what's happening and what can I do. It was a really strong thing and something a super bright 13 yo might be ready to do. And if she's not, they'd find more ways to work together. But just saying you don't have to go it  ALONE and she doesn't have to problem solve ALONE. The psych would bring in more resources and be like rocket fuel.

Edited November 20, 2018 by PeterPan

[PeterPan]

Definitely look into the Interoception stuff if you haven't yet. Kelly Mahler is coming out with her new curriculum soon, and running through that might be just the thing to help her take over some of this. It sounds like she's in challenging situations where she needs to be self-advocate. So being able to recognize where her body is and know her list of tools and strategies would help immensely. The kit is good, but she needs to be learning how to drive this for herself. Interoception deficits cause the gap between knowing the strategies and actually being able to identify what you need to do and DOING them. 

[Dmmetler]

She’s planning to go back, and thinking through the “next time”. This isn’t the first time in 9 years of this sport that she’s overloaded and had to recover. Fortunately, the next two competitions are in venues she knows and ones that have connected hotels-so she is better able to escape, so hopefully she can be successful. 

It’s been long enough that a re-exam would probably be covered. It would also potentially be useful for college purposes. She doesn’t need academic accommodations, but housing may well require some. 

[Lawyer&Mom]

If I could go back in time, having a single room would have made all the difference when I was in college.  I needed a safe place to escape from the world, and having a roommate didn’t allow that.  If a label could help with housing, do it!   

[PeterPan]

35 minutes ago, dmmetler said:

She’s planning to go back, and thinking through the “next time”. This isn’t the first time in 9 years of this sport that she’s overloaded and had to recover. Fortunately, the next two competitions are in venues she knows and ones that have connected hotels-so she is better able to escape, so hopefully she can be successful. 

It’s been long enough that a re-exam would probably be covered. It would also potentially be useful for college purposes. She doesn’t need academic accommodations, but housing may well require some. 

That's good that things will look up for the next one!

YeahI don't know how long she'll be waiting to go to college, but evals for sure for that. If you do them now you could retouch on the insurance bill right as she graduates (assuming an 18-ish flight). 

Yes, my dd gets the limited number of people in the room, and from talking with people I really think it varies with the school how much service she'll get. At the univ where dd goes it's exceptionally uncommon, and I pushed really, really hard. They pushed back this 2nd year and wanted things updated so I paid to update them AGAIN. Now that's them, but just saying. And yes it's make/break for her, and no certain labels will not just automatically get you there. We had to present medical doctor AND psych documentation. We took our psych paper trail to the MD and he signed and wrote up everything. We had an additional counselor (not the DSM psych but a 3rd person, for real) and he made paper trail. But I think it's the medical paper trail that decides the dorm accommodations. It's a big ask. Our uni also is not upcharging, which others would. So like a big U might have all the levels but then it might be 2-3X more for that type of room after they say sure have it. Where dd is, they're just giving it to her, and even though she has a roommate both years the roommate has been a ghost, someone who is busy or introverted and not like dragging 20 people in and overwhelming her.

Having the extra space allows dd time to recover without people going in/out. It gives her room to set up what essentially looks like a sensory room, hehe. She has colored lights really long shag rugs, a whole bunk full of stuffed animals and pillows, all kinds of things. These rooms have a double and a triple bunk, so she uses the triple and has zones set up for each need. 

So yeah, that choice on next steps takes a lot of investigation, that's for sure. I think now there's also a lot more awareness of psychological needs, of needs for support (beyond academics), etc. So schools are having coordinators for kids with disabilities and having social clubs and helping them connect. My dd found her people like that naturally, but it's a smaller school. It's nice to have friends around your particular interests, but it's also nice to have friends who are just like you for sensory or whatever who GET it. 

Edited November 20, 2018 by PeterPan

[Dmmetler]

I had a single through college-my neurologist recommended it and did the request because I have really high sleep needs and decompensate badly without enough, solid rest. It’s a game changer. DD has done OK at summer programs, etc sharing a room, but those have always been a week or less (and most have been ones designed for PG kids-and while not all PG kids are 2e, sensory issues are probably more common than not in that population).