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Recommendations for my 7 yo daughter with ASD?


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#1 mshanson3121

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Posted 06 August 2017 - 02:39 PM

A spin off of my other post for my son. What approach/recommendations would you give for teaching my 7 year old daughter this upcoming year? We really, really burned out last year. Mostly just because of the issues with my son's learning, but also just because all we had on the go with our daughter (she had a busy year medically).

 

Our lives are hectic. Our daughter has high functioning Autism, as well as has some health issues which can keep us on the go sometimes (we have two trips to her hospital in September alone), and a major surgery is being contemplated. My son, daughter and I are also all being evaluated for Ehlers Danlos Syndrome, a genetic disorder, so we'll be on the road a bit for that (our children's hospital/specialists are 6 hours away, so every visit is an overnight trip, and honestly takes a day or two after once home to recuperate from). My father in law is also seriously ill, possibly dying, so we are helping with his care as well. Though once we get home care in place for him next month that will ease up, but we could potentially have a turbulent year with emotional distress for the children (they're very close to their grandfather). So, all of this needs to be taken into consideration. I feel like if we use curriculum we need something that is open and go.

 

On the other hand, I have contemplated taking a year to "deschool" in a sense, and just be very relaxed/unschoolish, taking a break from formal math etc... to just try and re-energize ourselves and find the joy in learning again, and also, for my daughter, really focusing on social skills, flexibility and ways to cope with her anxiety, but not sure if that's wise?

 

So with that background, here is some information on my daughter. I would really appreciate all your thoughts/insights. Thank you!!!

 

 

My daughter is 7, with HFA (advanced IQ, delayed socially/emotionally).

 

Some of her life-related struggles:

 

- She really struggles with flexibility and rigid thinking.
- Delayed emotional processing - things can happen and she "seems" to handle them fine at the moment, but then ends up crying about the event three months later out of the blue

- Some mild sensory issues, especially relating to her hair.

- Has a need for control. Really, really can be bossy, controlling and overbearing. This is anxiety driven.
- She also needs good rhythm/routine.

 

Some of her school-related struggles:

 

- Reading is still a work in progress. She can read CCVC, CVCC, and CVC words fairly well as long as they're short vowel. She has not been able to progress to long vowel yet. She has a lot of anxiety over reading and does NOT handle mistakes well. If she misses one or two words, she typically ends up losing it. We have to keep our phonics lessons VERY short - often just 5 minutes. She will only read aloud for practice for about 10 minutes.  In reading, I notice that she uses context clues from the pictures, will guess at words often based on their shape. Sometimes she can read a word in one sentence fine and then not know it on the next page. She can decode/sound it out/break it down perfectly well - WHEN I remind her to do it. She will always try other methods first. Still has a few letter reversals.

 

I have wondered whether a more word-family based program like Delightful Reading from SCM might be better (though that's far from open and go)? Or focusing more on sight words? My mother who is a teacher said that she doesn't think that phonics is probably her "reading learning style". I'm inclined to agree. I've also considered just backing off for another year, and just reading aloud to her lots, and letting her continue to practice with the readers that she has, knows.

 

- Printing needs some work, still has some reversals, but it's not that bad.

- Short attention span. Last year (grade 1), we only did about 30 minutes of work per day.
- She's a perfectionist with a short fuse who needs to learn to listen to instruction (lol)

- Still needs work on various social skills, including peer related ones. We have planned to use Social Express and some resources for Flexible Thinking this year.

- Is a very visual learner. She does not do well with auditory input. She will quite literally reach her hand out, put it on the page, and ask me to stop reading, because she is getting overwhelmed and needs a break.

 

Her strengths:

- She is an incredible self-motivated learner. She would easily excel with unschooling, IMO, because she is so driven and so independent. When she wants to know something, she won't stop until she learns it.

- Math. See above. We have done 0 formal lessons with her so far outside of some random math fact worksheets, and yet she has taught herself/picked up on so much including money, time, measurement, fractions, adding, subtracting, skip counting, math facts etc... She is starting to pick up on multiplication now. She has an incredible ability to see patterns. She LOVES speed drills, and for "fun", she loves to print out "books" of math facts to 100. 

- She loves to memorize things like math facts, poems, prayers etc... We had great fun last year memorizing poetry and then doing recitations.

- She has incredible fine and gross motor skills, and hand-eye coordination. She is a natural athlete through and through, and loves to get dirty and hands on. She is the girl who is out in the garage with her father taking apart the lawn mower trying to fix it. Last year she helped my husband build our deck - and by helped I mean she was cutting 2x6's with a hand saw, using an impact drill etc... She LOVES to help - whether it's her father building, or me with the housework, she really loves to help others.

- She is teaching herself to play the piano, using the Bastien Primer books.

- Loves music and art, especially painting

- Loves handicrafts such as knitting (she knit a scarf for the fair's hobby show), sewing, baking, gardening etc...

 

Preferences:

 

- She does far better with short subjects.

- Prefers math over reading, and really has no interest at all in science or history

- Loves art projects

 

 

So, I think that gives an overview!
 

 


Edited by mshanson3121, 06 August 2017 - 04:33 PM.


#2 OneStepAtATime

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Posted 06 August 2017 - 03:33 PM

O.k. I had posted on your other two threads but with this post I am saying don't go loosey goosey like I had said might work well for your son's threads.  I don't think that will work well at all with your daughter.  She is going to need structure and predictability or her anxiety may ratchet up 10 fold.  It sounds like she is already having to deal with shifting schedules.

 

 I have to go but I will return later.  I know there are some wonderful people on LC that have kids with Autism that will hopefully post soon.  


Edited by OneStepAtATime, 06 August 2017 - 06:53 PM.

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#3 Crimson Wife

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Posted 06 August 2017 - 06:52 PM

Oral language precedes reading so I would really focus on shoring up the foundation before worrying too much about the reading. How is she at retelling a narrative if you read the story aloud to her? Does she struggle with "functional" words like prepositions, pronouns, conjunctions, etc.?

 

Several posters with kids who have ASD have discovered that there were "hidden" language comprehension gaps. I don't want to speak for them so hopefully they will chime in.


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#4 Crimson Wife

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Posted 06 August 2017 - 07:03 PM

Some programs I really like:

 

The Processing Program

The Grammar Processing Program

Fold & Say Auditory Processing and Story Comprehension

We Thinkers (old edition was called Incredible Flexible You if you want to purchase used)

 


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#5 OhElizabeth

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Posted 06 August 2017 - 07:34 PM

Yes to We Thinkers!!!!!!!!  That would be your best, best ,best option right now. There's We Thinkers 1 and We Thinkers 2. I have my set (labeled IFY, but the same content) that I could sell off. Bug me back channel if you want it. Super super fab for that age. That's when we did it and was like ASTONISHING what it did and what it opened up for him.

 

Honestly, you could consider bringing in an ABA worker. It would save your sanity. I use ABA workers in my home.

 

When you're saying short fuse and 30 minutes, I hate to say it, but she's not gonna just outgrow that, poof. That's gonna be like her whole life is self-regulation, group plan vs. what I want to do, come into their world vs. stay in your own world, etc. And that's where having a worker helps me. Even with my dd going away to college, I still have more to do, kwim? ONE DC can need more and suck up more attention than one human being can healthfully give. Some kids are just very intense and suck it up! So for us, that's how we get there, by having workers. Gives me time to shower, clean, stay sane.

 

Don't die, but I use a lot of printable ebook worksheets from TeacherCreated, Carson-Dellosa, Evan Moor, etc. They have really witty stuff! It catches holes they might have, like generalizing the math skills or understanding word problems. She sounds like she has some real strengths, so that might even be stuff she could do independently.

 

For us, it was a goal to get him doing more work and interacting more. Like to me, that 30 minutes is low. I'm not saying kill someone with school work, kwim? But I'm saying we want the INTERACTION to go up, the language to go up, the give and take to go up. We want there to be enough demands in her life that she gets to work on her calming strategies. We want to work on Zones of Regulation and have check-ins and calming breaks, so she can figure out that she CAN keep calm and work longer and that she CAN use her strategies when she needs to chill. And we want her to have LANGUAGE for all that.

 

For my ds, it was a shift from being passive (whatever his body was doing to him) to gaining some self-control.

 

Yes, the control gig is the anxiety and it's common in autism, sigh. Honestly, when our workers started coming in, they basically let him control everything. It built a relationship. Then they slowly started making demands, like hey we're gonna need to take turns, oh I don't want to do it that way, oh we need to do this first, etc. We've had a full year of that, and only now are we starting to have conversations like who is the leader, who is the follower here... He can understand that now and go oh, I need to let someone else lead, I'm not the leader all the time. But that wasn't the starting point, kwim?

 

There are things known to reduce anxiety and increase predictability. She may need a weekly schedule visible AND a daily schedule. Every worker that comes in has a list on the whiteboard. I keep multiple whiteboards on the walls in his office. They don't have to work in the office, but the plan is there for them to check off. He can see the plan and know the plan. So his plan right now (it's summer, sorta lite!):

 

1-play 25 minutes

2-Read Aloud with snack-15 min

3-Addition Machine-5 min

4-packet #1-10 min

5-poetry read aloud-5 min

6-packet #2-10 min

7-Doodles-10 min

8-packet #3-10 min

9-Immersion Reading (you could do your phonics)-10 min

10-Pranks book-10 min

11-Play!!-1 hour 5 min

 

So you see, the worker doing that list with him really only did 30 minutes of actual work, just like you're doing. Everything else was highly preferred stuff (hands-on, fun, stuff we know he likes or has learned to like). And even the packets aren't really 10 minutes. I use file folders now, because I want the methodology consistent from worker to worker. Inside I put whatever work is the plan. So I might have some math worksheets or reading comprehension worksheets or word searches. I keep them on the easy side, not instructional level, because the goal is compliance and gentle exposure. If it's something at intervention level (my ds has multiple SLDs), then I do it. But with a worker, everything is more gentle. 

 

So that kind of routine gives us a flow (demand, preferred, demand, preferred) that keeps him calm. He usually takes a chill break in there. When we started a year ago, we actually SCHEDULED chill breaks. So like our list might have 20 things and it would say play, chill break, read aloud, packet, chill break, etc. And literally we had two defacto chill breaks for every demand. Like if the demand was spelling or a math packet or whatever, then he was going to have a physical chill break (movement game, a calming strategy, whatever) and also a 2nd thing right after that that also was defacto a calming break (read aloud, whatever). One strategy that worked really well this year was to have a longer read aloud and work on it in 10 minute increments. So they might work on that book 3-4 times in a 3 hour session, kwim?

 

For my ds, learning to stay calm, learning how to take a break calmly, learning ways to calm down and ways that are not appropriate or acceptable to calm down (not ok to hurt people, not ok to break things), these were huge. That self-regulation piece makes EVERYTHING better. It's way, way, way, WAY more important to work on the social thinking, the calming, the expectation of staying calm and interacting, than it is particularly what you're working on. So the work could be highly preferred! It doesn't have to be stressful. Like if she's crazy into butterflies and playmobil, do butterflies and playmobil, kwim? I mean, I joke about it, but I paid my workers to play with my ds. Play, when you're having to stay calm and do some give and take and maybe not get it your way all the time, is HARD!!

 

Ok, I'll just say this. I don't have my ds in school but he does have an IEP because of our state scholarship program. I totally, totally get why someone would not want to put their dc in school or why it doesn't fit. I'll also just put that out there. For us, having more workers with more hours of people really ON with him helps. My ds needs more ON time than one person can healthfully give. You can do it, but to do it AND take care of a dying relative and and and, that's really hard! In our area, the scholarship program drives everything. I'm able to bring in workers using the scholarship money. We were in a way ugly position when we started. You look at us now, a year later, and things are so much calmer. Now my ds can work with *any* worker. We have things calmed down enough that I can literally just bring in someone and have the expectation that he can work for them, can choose a safe way to stay calm or take a chill break. It's really good. It's a better place to be. He regresses without enough interaction. He sort of recedes into his world and we lose him. It's always this fight we have. Like we're human and have our own needs, but when I'm not careful we lose ground with him. Then he's back to in closets and saying he wants to be left alone. He really thrives on interaction now. He just has to have it at a pace and a balance he can handle.

 



#6 mshanson3121

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Posted 06 August 2017 - 07:40 PM

Oral language precedes reading so I would really focus on shoring up the foundation before worrying too much about the reading. How is she at retelling a narrative if you read the story aloud to her? Does she struggle with "functional" words like prepositions, pronouns, conjunctions, etc.?

 

Several posters with kids who have ASD have discovered that there were "hidden" language comprehension gaps. I don't want to speak for them so hopefully they will chime in.

 

Honestly we haven't really done a lot of retelling of what we read etc... though we have done story telling. It just all depends. Sometimes she struggles to get one or two sentences, and other times she comes up with elaborate stories several paragraphs long, lol. I find she does worse when being given a specific topic/prompt, and far better when she can use her own imagination/ideas. She has a pretty good grasp on the functional words.



#7 OhElizabeth

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Posted 06 August 2017 - 07:50 PM

I'm looking at her list of strengths. They're amazing! You definitely want to roll with that. Definitely the challenge is to work on the stuff she's *not* doing for herself, not the stuff she is. It sounds like she needs more explicit reading instruction. You can get into the Eides and the whole broohaha of whether autistics have dyslexia. Fine, good for them. My ds is diagnosed as dyslexic as well and he benefited from Barton. It sounds like whatever she's had isn't explicit enough. Given that your ds is having discrimination issues, it might be that hers are just a little more severe and enough to get in the way. You could give her the Barton pretest and see what happens. Did anyone run a CTOPP on her? Like I said, I used Barton. AAR would be another choice. Something explicit. Given that she's struggling with behaviors, it would be better for the instruction to be more explicit so that she definitely gets it. 

 

Ok, I'm thinking about this. When I work with my ds, when I'm like ok I'm busy and this is bare minimum but we're actually going to work, I'm gonna to go for about 90 minutes. And that's going to be 3-6 things alternating with preferred. My ds says I'm really fun to work with! I try to keep it pretty uptempo. I put everything in a pile in front of us, in order, and we bang it out. And basically I'm going to alternate fun and demand, fun and demand. With a beginner like that, I would go chill break, fun, demand, chill break, fun, demand. And for those chill breaks, I would make a menu of things, list it out on the board (things you both agree she enjoys and finds calming) and then pick your 3-4 for the session. That puts her more in control while she gives up some control to the list, kwim? And you can tell her upfront we're going to try lots of chill breaks to find ones that work for us!

 

If she understands turtle speed and rabbit speed (ALERT, red/yellow/green light), then go with that. I think the program for speed is How Does Your Motor...  Anyways, that might work for her as a starting point. You can do a check-in when you start, like I'm in turtle or I'm in rabbit, and then you can do your break that fits that (calming down or speeding up). That's how we were working at that age. Now, at 8 1/2, he's finally ready to do Zones of Reg. It's way more complex honestly, so I would start with the simpler stuff. 5 Point system is good too. 

 

I would not do Social Thinking work with her at the same time as your work list. It's going to be too intense. I would suggest carving 30-45 minutes a couple times a week and working on it then. Or get an OT or behaviorist to do it with her. They can come to your house or you can go there. We had an OT who was killer with 5 Point, ALERT, etc. Anyways, that kind of work is fatiguing. It's ok to review the books during your daily work plan, but basically I would make the focus of your daily work plan hitting your other goals (calming strategies, compliance, language, interaction/engagement). Anything intensive like Social Thinking can be done separately and briefly. That way they can just walk away and have a break and they don't pair it with school work in their minds.



#8 OhElizabeth

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Posted 06 August 2017 - 07:51 PM

One of my workers did a science kit with him. Like every session, they'd do the next lab in the kit. It was very fun and it helped with behavior. It was motivating, good pairing, blah blah. Another of my workers did the SOTW activities with him. Not the whole gig with the read alouds, just the activities. :D

 

I'm saying that if it sounds like I'm saying make a list of work, I'm really not. For us, our goal was interaction, engagement, compliance, calming strategies. ANYTHING that lets us work on that is good! So if they have interests and things they enjoy, we do it. And we make progress because they're having to be there, rather than off in their closet, kwim? Just the act of doing it together helps us work on *our* goals. Our sessions are a LOT of what he wants, and just a little bit of what we demand. It's a balance. Life with no demands isn't realistic, kwim? 

 

How is she with play? I pay my people to play with him, because I want him to be able to have play dates. It's a work in progress. Around here, Wii is a big thing. I paid my workers to play Wii with him, seriously, so he would have calm, expected behaviors and be able to play Wii for playdates. I'm working on getting someone to play basketball and do some sports stuff with him. He's very athletic, but he doesn't stay calm. He'll start touching people or having behaviors or get frustrated. So I pick things that are important, I think, to help him take steps. 

 

How is she at losing? My ds was nightmare horrible. Like really nightmare. We're doing really well with the games from Family Pastimes. We LOVE the ones we've gotten so far: Round-Up, Secret Door, and Caves and Claws. They have a ton of language, turn taking, and you don't typically completely lose even when you lose. It has really helped us have a way to practice losing gently. The games are brief enough (under 10 minutes) that you can just play again! And like say you're trying to rescue 5 horses in Round Up. Even if you only get 3, it was still a partial win, kwim? Or on Secret Door, you might guess 2 of 3 items behind the door. So games can go on the list and be called school! They might be a motivator, or they might be a way you start. Just depends on how she reacts to them. My ds does well with 20-30 minutes of play to transition. So I can play those games with him for 20 minutes, saying hey we're going to play some games and then we'll go work our pile, and he's cool with that. It's a way he transitions.

 

Also, this is just a total aside, but if I don't get my ds FIRST THING, it's over, absolutely over. Like he used to just walk out the door and leave. Now he tells me first, before he walks out the door. LOL So you might have logistics like that, depending on when she wakes up and how she rolls. She might have a time of day she's easiest to connect with. 

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Edited by OhElizabeth, 06 August 2017 - 07:59 PM.


#9 mshanson3121

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Posted 06 August 2017 - 07:51 PM

Yes to We Thinkers!!!!!!!!  That would be your best, best ,best option right now. There's We Thinkers 1 and We Thinkers 2. I have my set (labeled IFY, but the same content) that I could sell off. Bug me back channel if you want it. Super super fab for that age. That's when we did it and was like ASTONISHING what it did and what it opened up for him.

 

Honestly, you could consider bringing in an ABA worker. It would save your sanity. I use ABA workers in my home.

 

When you're saying short fuse and 30 minutes, I hate to say it, but she's not gonna just outgrow that, poof. That's gonna be like her whole life is self-regulation, group plan vs. what I want to do, come into their world vs. stay in your own world, etc. And that's where having a worker helps me. Even with my dd going away to college, I still have more to do, kwim? ONE DC can need more and suck up more attention than one human being can healthfully give. Some kids are just very intense and suck it up! So for us, that's how we get there, by having workers. Gives me time to shower, clean, stay sane.

 

Don't die, but I use a lot of printable ebook worksheets from TeacherCreated, Carson-Dellosa, Evan Moor, etc. They have really witty stuff! It catches holes they might have, like generalizing the math skills or understanding word problems. She sounds like she has some real strengths, so that might even be stuff she could do independently.

 

For us, it was a goal to get him doing more work and interacting more. Like to me, that 30 minutes is low. I'm not saying kill someone with school work, kwim? But I'm saying we want the INTERACTION to go up, the language to go up, the give and take to go up. We want there to be enough demands in her life that she gets to work on her calming strategies. We want to work on Zones of Regulation and have check-ins and calming breaks, so she can figure out that she CAN keep calm and work longer and that she CAN use her strategies when she needs to chill. And we want her to have LANGUAGE for all that.

 

For my ds, it was a shift from being passive (whatever his body was doing to him) to gaining some self-control.

 

Yes, the control gig is the anxiety and it's common in autism, sigh. Honestly, when our workers started coming in, they basically let him control everything. It built a relationship. Then they slowly started making demands, like hey we're gonna need to take turns, oh I don't want to do it that way, oh we need to do this first, etc. We've had a full year of that, and only now are we starting to have conversations like who is the leader, who is the follower here... He can understand that now and go oh, I need to let someone else lead, I'm not the leader all the time. But that wasn't the starting point, kwim?

 

There are things known to reduce anxiety and increase predictability. She may need a weekly schedule visible AND a daily schedule. Every worker that comes in has a list on the whiteboard. I keep multiple whiteboards on the walls in his office. They don't have to work in the office, but the plan is there for them to check off. He can see the plan and know the plan. So his plan right now (it's summer, sorta lite!):

 

1-play 25 minutes

2-Read Aloud with snack-15 min

3-Addition Machine-5 min

4-packet #1-10 min

5-poetry read aloud-5 min

6-packet #2-10 min

7-Doodles-10 min

8-packet #3-10 min

9-Immersion Reading (you could do your phonics)-10 min

10-Pranks book-10 min

11-Play!!-1 hour 5 min

 

So you see, the worker doing that list with him really only did 30 minutes of actual work, just like you're doing. Everything else was highly preferred stuff (hands-on, fun, stuff we know he likes or has learned to like). And even the packets aren't really 10 minutes. I use file folders now, because I want the methodology consistent from worker to worker. Inside I put whatever work is the plan. So I might have some math worksheets or reading comprehension worksheets or word searches. I keep them on the easy side, not instructional level, because the goal is compliance and gentle exposure. If it's something at intervention level (my ds has multiple SLDs), then I do it. But with a worker, everything is more gentle. 

 

So that kind of routine gives us a flow (demand, preferred, demand, preferred) that keeps him calm. He usually takes a chill break in there. When we started a year ago, we actually SCHEDULED chill breaks. So like our list might have 20 things and it would say play, chill break, read aloud, packet, chill break, etc. And literally we had two defacto chill breaks for every demand. Like if the demand was spelling or a math packet or whatever, then he was going to have a physical chill break (movement game, a calming strategy, whatever) and also a 2nd thing right after that that also was defacto a calming break (read aloud, whatever). One strategy that worked really well this year was to have a longer read aloud and work on it in 10 minute increments. So they might work on that book 3-4 times in a 3 hour session, kwim?

 

For my ds, learning to stay calm, learning how to take a break calmly, learning ways to calm down and ways that are not appropriate or acceptable to calm down (not ok to hurt people, not ok to break things), these were huge. That self-regulation piece makes EVERYTHING better. It's way, way, way, WAY more important to work on the social thinking, the calming, the expectation of staying calm and interacting, than it is particularly what you're working on. So the work could be highly preferred! It doesn't have to be stressful. Like if she's crazy into butterflies and playmobil, do butterflies and playmobil, kwim? I mean, I joke about it, but I paid my workers to play with my ds. Play, when you're having to stay calm and do some give and take and maybe not get it your way all the time, is HARD!!

 

Ok, I'll just say this. I don't have my ds in school but he does have an IEP because of our state scholarship program. I totally, totally get why someone would not want to put their dc in school or why it doesn't fit. I'll also just put that out there. For us, having more workers with more hours of people really ON with him helps. My ds needs more ON time than one person can healthfully give. You can do it, but to do it AND take care of a dying relative and and and, that's really hard! In our area, the scholarship program drives everything. I'm able to bring in workers using the scholarship money. We were in a way ugly position when we started. You look at us now, a year later, and things are so much calmer. Now my ds can work with *any* worker. We have things calmed down enough that I can literally just bring in someone and have the expectation that he can work for them, can choose a safe way to stay calm or take a chill break. It's really good. It's a better place to be. He regresses without enough interaction. He sort of recedes into his world and we lose him. It's always this fight we have. Like we're human and have our own needs, but when I'm not careful we lose ground with him. Then he's back to in closets and saying he wants to be left alone. He really thrives on interaction now. He just has to have it at a pace and a balance he can handle.

 

Oooh.... I would definitely be interested in your program. I was going to buy it new, but it was just way outside our budget (we're Canadians, so have to tack on 30% exchange to everything. Thankfully we do have a US post office box that we rent for shipping). I'll message you on that.

 

Unfortunately where we are in Canada, there is no ABA available after age 5 - either through public programs or private :( We're 100% on our own, except for occasional occupational and speech therapy a few times year.

 

We actually just introduced the weekly schedule, and we were planning on getting a daily visible schedule too. Her medical issues really up her anxiety, too. I will say we're lucky, day to day, meltdowns/tantrums are few and far between. But they definitely pick up when a) our routine/schedule has gotten off b) life has gotten too hectic/busy c) she has an upcoming medical appointment. We have a great psychologist at least that we work with each time we go to the hospital for the medical end of things.

 

I get what you're saying about increasing the demands, that's a good idea. I had even thought about doing up some If..Then... charts etc... gradually increasing the amount of tasks required to get the reward.
 


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#10 mshanson3121

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Posted 06 August 2017 - 07:59 PM

I'm looking at her list of strengths. They're amazing! You definitely want to roll with that. Definitely the challenge is to work on the stuff she's *not* doing for herself, not the stuff she is. It sounds like she needs more explicit reading instruction. You can get into the Eides and the whole broohaha of whether autistics have dyslexia. Fine, good for them. My ds is diagnosed as dyslexic as well and he benefited from Barton. It sounds like whatever she's had isn't explicit enough. Given that your ds is having discrimination issues, it might be that hers are just a little more severe and enough to get in the way. You could give her the Barton pretest and see what happens. Did anyone run a CTOPP on her? Like I said, I used Barton. AAR would be another choice. Something explicit. Given that she's struggling with behaviors, it would be better for the instruction to be more explicit so that she definitely gets it. 

 

Ok, I'm thinking about this. When I work with my ds, when I'm like ok I'm busy and this is bare minimum but we're actually going to work, I'm gonna to go for about 90 minutes. And that's going to be 3-6 things alternating with preferred. My ds says I'm really fun to work with! I try to keep it pretty uptempo. I put everything in a pile in front of us, in order, and we bang it out. And basically I'm going to alternate fun and demand, fun and demand. With a beginner like that, I would go chill break, fun, demand, chill break, fun, demand. And for those chill breaks, I would make a menu of things, list it out on the board (things you both agree she enjoys and finds calming) and then pick your 3-4 for the session. That puts her more in control while she gives up some control to the list, kwim? And you can tell her upfront we're going to try lots of chill breaks to find ones that work for us!

 

If she understands turtle speed and rabbit speed (ALERT, red/yellow/green light), then go with that. I think the program for speed is How Does Your Motor...  Anyways, that might work for her as a starting point. You can do a check-in when you start, like I'm in turtle or I'm in rabbit, and then you can do your break that fits that (calming down or speeding up). That's how we were working at that age. Now, at 8 1/2, he's finally ready to do Zones of Reg. It's way more complex honestly, so I would start with the simpler stuff. 5 Point system is good too. 

 

I would not do Social Thinking work with her at the same time as your work list. It's going to be too intense. I would suggest carving 30-45 minutes a couple times a week and working on it then. Or get an OT or behaviorist to do it with her. They can come to your house or you can go there. We had an OT who was killer with 5 Point, ALERT, etc. Anyways, that kind of work is fatiguing. It's ok to review the books during your daily work plan, but basically I would make the focus of your daily work plan hitting your other goals (calming strategies, compliance, language, interaction/engagement). Anything intensive like Social Thinking can be done separately and briefly. That way they can just walk away and have a break and they don't pair it with school work in their minds.

 

Where would I find the Barton pretest? I have NO idea what the CTOPP is, so I'm gonna say no. Her last testing was all the psychological assessments for formal ASD diagnosis when she was 4.5. We haven't done any since then. I have been eyeballing AAR. I had considered ETC as well.

I like the idea of choices, she definitely does better when she has some choices. We have done the Red, Yellow and Green zone for "emotions". She definitely grasps the concept, because she just LOVES to tell me when I am entering the yellow zone, or have entered the red zone, LOL. But we need to work on her own self-control things. One thing we have learned is that she NEEDS peace and quiet to calm down. Just let her go to her room and leave her alone for a bit. Trying to discipline her, talk to her etc... in the moment does NOT work. Lately, just in the last month or so, I notice that she is developing more remorse for her tantrums. She will get upset, scream at me, go upstairs to calm down, and then on her own after awhile, comes down to me to hug, cuddle, apologize etc...

We have been using the online program Social Express, which she really loves. And it's great because it's short and sweet.
 


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#11 OhElizabeth

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Posted 06 August 2017 - 08:10 PM

Ooo, someone had mentioned Social Express. I hadn't heard feedback on it, but it sounds like it might be doing good things for you! Or it could be girl strengths. Or it could be you're doing AWESOME. :)

 

Family Pastimes Secret Door - An Award Winning Co-operative Mystery Game

 

Students | Barton  link to the pretest

 

I use whiteboards for everything. They're pretty cheap at this time of year. I have 3 sort of largish (2'X3') velcroed to the wall and a big one for instruction. I have smaller ones (17X20?) that we use just at the table for math, whatever.

 

It sounds like you're doing a lot of good things! Yes, my ds goes to his room to calm down. We keep his closet cleared of other things, and he has soft pillows with lots of textures on the floor there and blankets. He keeps some stuffed animals in there and sometimes a toy guitar that he will strum. 

 

You can look up the Autism Discussion Page on FB. He has a lot of posts you might enjoy. 

 

Really, it sounds like you're doing things very well! That's rough that their system makes it hard to get access past a certain age, sigh. For me, the challenge is to get vision, to get someone besides me to say hey this is where we could be at. 

 

I think it's ok to make small steps and do things consistently. These aren't kids who need to do EVERYTHING. I "did school" with my dd (straight ADHD). With my ds, we just interact. It's a very true form of interaction. We're going to work on the relationship, have some give and take while we work on some demands and do his preferred things, and then he'll get some free time. And we're going to have compliance work throughout the day and things we do together to keep working on that relationship. In some ways, ds is so POST school. Things that are content are easy for him, and things that are simple for other kids (calming, give and take, group plan, noticing stuff, etc.) are hard for him. And it's ok to have a true education that fits what he needs, what he really needs. My ds doesn't really need a history program. What my ds really needs is to understand why people do stuff so he can be comfortable with the world. 


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#12 mshanson3121

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Posted 06 August 2017 - 08:12 PM

One of my workers did a science kit with him. Like every session, they'd do the next lab in the kit. It was very fun and it helped with behavior. It was motivating, good pairing, blah blah. Another of my workers did the SOTW activities with him. Not the whole gig with the read alouds, just the activities. :D

 

I'm saying that if it sounds like I'm saying make a list of work, I'm really not. For us, our goal was interaction, engagement, compliance, calming strategies. ANYTHING that lets us work on that is good! So if they have interests and things they enjoy, we do it. And we make progress because they're having to be there, rather than off in their closet, kwim? Just the act of doing it together helps us work on *our* goals. Our sessions are a LOT of what he wants, and just a little bit of what we demand. It's a balance. Life with no demands isn't realistic, kwim? 

 

How is she with play? I pay my people to play with him, because I want him to be able to have play dates. It's a work in progress. Around here, Wii is a big thing. I paid my workers to play Wii with him, seriously, so he would have calm, expected behaviors and be able to play Wii for playdates. I'm working on getting someone to play basketball and do some sports stuff with him. He's very athletic, but he doesn't stay calm. He'll start touching people or having behaviors or get frustrated. So I pick things that are important, I think, to help him take steps. 

 

How is she at losing? My ds was nightmare horrible. Like really nightmare. We're doing really well with the games from Family Pastimes. We LOVE the ones we've gotten so far: Round-Up, Secret Door, and Caves and Claws. They have a ton of language, turn taking, and you don't typically completely lose even when you lose. It has really helped us have a way to practice losing gently. The games are brief enough (under 10 minutes) that you can just play again! And like say you're trying to rescue 5 horses in Round Up. Even if you only get 3, it was still a partial win, kwim? Or on Secret Door, you might guess 2 of 3 items behind the door. So games can go on the list and be called school! They might be a motivator, or they might be a way you start. Just depends on how she reacts to them. My ds does well with 20-30 minutes of play to transition. So I can play those games with him for 20 minutes, saying hey we're going to play some games and then we'll go work our pile, and he's cool with that. It's a way he transitions.

 

Also, this is just a total aside, but if I don't get my ds FIRST THING, it's over, absolutely over. Like he used to just walk out the door and leave. Now he tells me first, before he walks out the door. LOL So you might have logistics like that, depending on when she wakes up and how she rolls. She might have a time of day she's easiest to connect with. 

SaveSave

 

She has come a loooong way with play. When she was initially diagnosed on the spectrum (at roughly 2.5 years of age) she was moderate to more severely affected. While she had some atypical strengths (never had speech delays for example, and could make some eye contact), she was the child that was off in her own world. If you let her she would go in her room and never make a sound all day. She did not play make believe, she just arranged and organized her toys. Any verbal play was a lot of scripting or copying her brother. And absolutely forget about peer interaction. Now however, she does great considering. Now when she is at home alone, she likes to "arrange" things, but does do more imaginary play with Lego and Playmobil and is getting more into playing "house" with dolls. And when with a peer, she can now play with them and easily follow along with a storyline. She is getting better at carrying on a conversation with peers. I find her imagination is coming out more and more, she is taking more initiative in everything from playing with toys to arts and crafts.

As for losing.... that's a work in progress ;) She is actually better at losing in peer/social settings than at home with her brother or us. Ex: this past weekend she competed in 3 different events at the fair. She lost two of them, and handled it with utmost grace.  She is however EXTREMELY competitive with her brother. It's combination just general personality trait (her father said he and his three brothers were extremely competitive growing up and all had quite the tempers) and ASD. I swear I'm amazed that they haven't argued over who breathes first in the morning. It never ceases to amaze me the things she/they can turn into a competition. DRIVES ME UP THE WALL.  That said - she is getting much better at losing during games etc.. We play board games regularly here. When playing a board game as a group she normally can lose without a problem. When it's one on one with her brother that can be a bit more challenging.

 

 

 

 


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#13 OhElizabeth

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Posted 06 August 2017 - 08:25 PM

Crimson was mentioning speech therapy materials to you. You can work on narratives as the foundation of composition and bring them into your play time. Right now with ds we're building narratives with playmobil, taking pictures, writing narratives. It's a way to build up to oral narration. If you read a chapter or picture book to her, can she narrate back? Can she tell you how her day went? 

 

Yeah, sounds like doing the cooperative board games with her brother would be healthy. :D

 

If they find the Family Pastimes games boring, Forbidden Desert and Forbidden Island are awesome. 


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#14 Crimson Wife

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Posted 06 August 2017 - 09:45 PM

Honestly we haven't really done a lot of retelling of what we read etc... though we have done story telling. It just all depends. Sometimes she struggles to get one or two sentences, and other times she comes up with elaborate stories several paragraphs long, lol. I find she does worse when being given a specific topic/prompt, and far better when she can use her own imagination/ideas. She has a pretty good grasp on the functional words.

 

Retelling a narrative that she has heard read aloud is a completely different skill than making up her own story. I read research in one of my Communicative Disorders courses that reading comprehension test scores at age 10 can be predicted by narrative retelling skills in K. Reading comprehension builds on the child's listening comprehension skills. It is VERY common for kids with ASD to have weakness in listening comprehension and narrative language even if they seem like they have age-appropriate verbal abilities.

 

You can actually download a FREE narrative language assessment called CUBED. The "Listening" portion is what you would want to administer to check her auditory comprehension abilities.


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#15 Amy Elizabeth

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Posted 06 August 2017 - 10:17 PM

Haven't read every reply, but I wanted to point out that you may see some heightened anxiety in her this year with all you have going on. While structure can help with anxiety, it is more of a coping strategy than a way to actually address the anxiety. There has been a lot written recently about using yoga and mindfulness for people on the spectrum. I have ASD, and my health deteriorated due to chronic stress to the point I was homebound for a year. I started CBD counseling and yoga, and within 6 months was better than I had been in years. Also, in some way, ABA can contribute to stress (not always but sometimes).

On academics, when we have been super busy and on the road a lot, I have found listening to audiobooks on lots of different subjects and having them narrate back what they hear extremely helpful!!!! (I highly recommend using LibriVox for audiobooks and recommend Clara Dillingham Pearson for science, Fifty Famous Stories Retold for history, maybe folk tales around the world for geography, and then some literature as well) Reading will likely be delayed because language was delayed so don't push it (biggest mistake Ive made so far). Let math continue as is and do as much art, music, handicrafts, poetry, hymns, etc as she wants....those can be so good for combating anxiety.

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#16 OhElizabeth

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Posted 06 August 2017 - 10:53 PM

We went through a death in our family this year, someone very, very close to ds, and that was hard. Having the consistency of the ABA worker was actually really good for ds. We backed off demands and just would focus on being together. 

 

ABA as stressful is kind of a two-sided thing. It's stressful when you start because it's new. If it continues to be stressful, I think the challenge there is to figure out why. We had a worker who was good for ds who stopped being a good fit. He just progressed to a point where he needed a different way of working, and that worker couldn't work that way. THEN it was stressful! 

 

Agree on the mom stress. We did some things for me this year that were really good.

 

If you're wanting mindfulness stuff, we've had some threads on it. I don't know, my ds isn't the kind to really slow down for it. You can put on a cd and he'll listen. My ds isn't one to sit around and do Yoga Pretzels and that kind of thing. We have it and the workers have tried. He's just not slow-paced like that. He can do a little bit with naming body parts and how they feel while he's under a blanket (my version of a body scan), but it's not easy to make happen.

 

I just got Mighteor, which is supposed to work on the interoception angle a bit I think. The thing that is REALLY actually really nice for us right now, don't laugh, is sort of a positive mindfulness. My ds gets stuck in really negative ruminations. When I go in to do his morning sensory (rubbing feet, ice cubes, etc.), I do some positive mindfulness and try to help him go to a happy place for a few minutes. We talk about Disney, our favorite foods there, what we would like to do if we stay on the beach when we (Lord willing) go back down... He LOVED Disney, like over the moon loved it. For him, Disney is his happy place. He can go there in his mind and get really positive, remembering how delicious the chocolate milk was, how much he liked the mac and cheese, which rides were his favorite, etc. 



#17 Amy Elizabeth

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Posted 06 August 2017 - 10:59 PM

It just soooo depends on the kid! I had one kid that did great with ABA and one that it did NOT work for... AT ALL!!!! (and I was trained in ABA professionally... I didn't think I would ever see a kid that it didn't work with... And then I had my son!) Same thing with yoga and mindfulness. I have a 9 year old who LOVES meditation, and my 7 year old enjoys yoga positions (especially if we use the yoga spinner game). But my 9 year old doesn't enjoy the yoga positions, but loves going to the adult meditation class down the street! They are just all so different!!!

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#18 OhElizabeth

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Posted 06 August 2017 - 10:59 PM

Retelling a narrative that she has heard read aloud is a completely different skill than making up her own story. I read research in one of my Communicative Disorders courses that reading comprehension test scores at age 10 can be predicted by narrative retelling skills in K. Reading comprehension builds on the child's listening comprehension skills. It is VERY common for kids with ASD to have weakness in listening comprehension and narrative language even if they seem like they have age-appropriate verbal abilities.

 

You can actually download a FREE narrative language assessment called CUBED. The "Listening" portion is what you would want to administer to check her auditory comprehension abilities.

 

This language thing is HUGE. I'm going to check out that CUBED. We had the dynamic assessment done by a Social Thinking trained person, and she did some narrative assessments, etc. Even though ds is on the young side to have IEP goals in reading comprehension, they went ahead and put them in because the IS (intervention specialist) sees it coming. So even kids who seem to read well and have high verbal IQs and high vocabulary (ds at 99th percentile) can still have comprehension issues and language issues. 

 

To me, and this is just me, I've decided to be pesky thorough, mainly because I'm watching people with older kids who are going wow, my kid is gifted and we're finding these HOLES... So starting young like this, it's easy to find materials that say 1st, 2nd, etc. for inferences, compare/contrasting, summarizing, etc. and just weave them into the schedule. We got the wh-questions flip and fold book Crimson likes, and our SLP had a way she wants us to step it up. Like instead of only answering the questions, we can discuss the picture and then generate questions. So the EXPECTATIONS are so high for the higher IQ kids that then the gaps we need to fill can be really nitpicky. It might not be as obvious at first. 



#19 OhElizabeth

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Posted 06 August 2017 - 11:04 PM

It just soooo depends on the kid! I had one kid that did great with ABA and one that it did NOT work for... AT ALL!!!! (and I was trained in ABA professionally... I didn't think I would ever see a kid that it didn't work with... And then I had my son!) Same thing with yoga and mindfulness. I have a 9 year old who LOVES meditation, and my 7 year old enjoys yoga positions (especially if we use the yoga spinner game). But my 9 year old doesn't enjoy the yoga positions, but loves going to the adult meditation class down the street! They are just all so different!!!

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And to make it even more complex, there's all kinds of stuff called ABA. You've got your strict/purist ABA, your umbrella billing term ABA, etc. So when I'm saying ABA, I'm only meaning umbrella term for insurance billing. I'm not saying DTT. What we're doing is naturalistic, with people I approve, emphasis on relationships and play and language.

 

I've heard some serious horror stories, so even beyond whether a methodology or person fits the kid, sometimes it's just the worker themselves is inappropriate!

 

And that's interesting that you have kids responding well to a class that weren't at home,  hehe. Gotta love it.



#20 Amy Elizabeth

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Posted 06 August 2017 - 11:08 PM

And to make it even more complex, there's all kinds of stuff called ABA. You've got your strict/purist ABA, your umbrella billing term ABA, etc. So when I'm saying ABA, I'm only meaning umbrella term for insurance billing. I'm not saying DTT. What we're doing is naturalistic, with people I approve, emphasis on relationships and play and language.

I've heard some serious horror stories, so even beyond whether a methodology or person fits the kid, sometimes it's just the worker themselves is inappropriate!

And that's interesting that you have kids responding well to a class that weren't at home, hehe. Gotta love it.

Yeah... Its weird. I did my own ABA at home using natural settings (places we were already going), and it worked GREAT for my daughter!!! But my son did not connect the dots between the antecedent, behavior, and consequence. He STILL doesn't really follow a logical, problem solving approach to interpreting consequences... His spatial/comprehension areas have some kind of issue... His sister is GREAT with spatial skills, patterns, etc, and I suspect that is why it worked so well for her. We ended up using it as a way to communicate sort of before her language came online.

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#21 OhElizabeth

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Posted 06 August 2017 - 11:20 PM

AE, I'm confused. You're saying you were trying to do social autopsies with him and he wasn't getting it? The Social Thinking people put that for a much later age. My ds wouldn't get that either. His understanding of things is really formative. Like right now we're working on saying Thank You, kwim? And we're really basic, like "When people do something nice for you, we say thank you. Say it with a sentence."  LOL I think girls are just a different beast. They really blow the timetable. I mean, I haven't raised an autistic girl, but I really think gender can factor in there. 

 

Right now, my ds is FINALLY understanding obeying. Our behaviorist gave us a new way to explain it: leader and follower. This actually makes sense to him, hallelujah. So like in church today I'm like the guy at the front is leading, we need to be following, and he could finally say Well I don't WANT to follow! :D Ornery boy. More lessons. More social thinking needs to occur. :D

 

So yeah, I'm thinking a social autopsy with him might be age 15 or something, lol.


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#22 OhElizabeth

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Posted 06 August 2017 - 11:23 PM

So with ds, we make the connection really OBVIOUS. Like the worker will say "When you do X, it scares me. When you scare me, I don't want to be with you. Then we can't play together." Or we'll tell him flat up "If you hit your worker, she'll be scared and she won't come back." He REALLY likes his new worker. She's only here for a monthly, but holy wow! She's like his little girlfriend, frail and pretty. He does ANYTHING for her. She could say let's jump in a lake, and he'd be like oh yes and kiss her feet. Score. :D

 

SaveSave


Edited by OhElizabeth, 06 August 2017 - 11:25 PM.


#23 Amy Elizabeth

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Posted 06 August 2017 - 11:57 PM

AE, I'm confused. You're saying you were trying to do social autopsies with him and he wasn't getting it? The Social Thinking people put that for a much later age. My ds wouldn't get that either. His understanding of things is really formative. Like right now we're working on saying Thank You, kwim? And we're really basic, like "When people do something nice for you, we say thank you. Say it with a sentence." LOL I think girls are just a different beast. They really blow the timetable. I mean, I haven't raised an autistic girl, but I really think gender can factor in there.

Right now, my ds is FINALLY understanding obeying. Our behaviorist gave us a new way to explain it: leader and follower. This actually makes sense to him, hallelujah. So like in church today I'm like the guy at the front is leading, we need to be following, and he could finally say Well I don't WANT to follow! :D Ornery boy. More lessons. More social thinking needs to occur. :D

So yeah, I'm thinking a social autopsy with him might be age 15 or something, lol.

No... More like... When my dd was small I put her in the pack N play every time she climbed into the fireplace (in Florida we don't use fireplaces but still good to learn not to crawl in a fireplace) and after a while she got it! But with my son... He just did NOT make the connection that crawling into the fireplace meant he went to the pack N play. There were a lot of other things like that... He had to be taught HOW to use a slide in a step by step manner... You couldn't show him. You had to physically move his feet to show him how it worked. He's also hyperlexic so he is not very classic to begin with. My daughter is more classic. I do agree gender can be a factor...as well as personality! But I think in this case it was a difference in type of ASD.

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#24 OhElizabeth

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Posted 07 August 2017 - 12:06 AM

So you're saying she's classic, but she's narrating well and getting cause effect. My ds struggles with narration and wasn't getting cause/effect. To me, that would be pretty expected for autism, I think.

 

So maybe kind of inverse in a way?

 

The slide thing just sounds like some praxis, motor planning.



#25 Amy Elizabeth

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Posted 07 August 2017 - 01:06 AM

So you're saying she's classic, but she's narrating well and getting cause effect. My ds struggles with narration and wasn't getting cause/effect. To me, that would be pretty expected for autism, I think.

So maybe kind of inverse in a way?

The slide thing just sounds like some praxis, motor planning.

I said she is classic because when we were getting her diagnosis she rocked all the time, stuck her finger in her eye for a visual stim, had no language at all (she responded well to Verbal Behavior), had no concept of danger/fear, didn't understand how to play with toys, and would run off with no notice and try to jump on balconies, run into streets, etc. But she is also a classic GIRL...and quite brilliant at that (her verbal IQ was below the norm but her spatial IQ was 150 which probably accounts for the cause and effect... She also tried to take down a sliding glass door at 2 with the correct screwdriver)

NOW she narrates beautifully because of all the work we have done. We found out she had undiagnosed Celiac Disease which helped a lot with relieving internal stress that was making learning and communicating difficult. We have also spent a great deal of time reading to her and having her narrate back (first with drawings later with words).

My son's motor planning issues may have been affected by his undiagnosed Celiac. His was much worse and he quit growing for a full year and a half because of it. He also had some muscle development issues because of it. But some form of understanding of cause and effect is critical to ABA and VB theory. The whole point of what we did with Verbal Behavior was to make the connection that when I sign cookie, I get a cookie. He would not make that connection.

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#26 mshanson3121

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Posted 07 August 2017 - 05:54 AM

I said she is classic because when we were getting her diagnosis she rocked all the time, stuck her finger in her eye for a visual stim, had no language at all (she responded well to Verbal Behavior), had no concept of danger/fear, didn't understand how to play with toys, and would run off with no notice and try to jump on balconies, run into streets, etc. But she is also a classic GIRL...and quite brilliant at that (her verbal IQ was below the norm but her spatial IQ was 150 which probably accounts for the cause and effect... She also tried to take down a sliding glass door at 2 with the correct screwdriver)

NOW she narrates beautifully because of all the work we have done. We found out she had undiagnosed Celiac Disease which helped a lot with relieving internal stress that was making learning and communicating difficult. We have also spent a great deal of time reading to her and having her narrate back (first with drawings later with words).

My son's motor planning issues may have been affected by his undiagnosed Celiac. His was much worse and he quit growing for a full year and a half because of it. He also had some muscle development issues because of it. But some form of understanding of cause and effect is critical to ABA and VB theory. The whole point of what we did with Verbal Behavior was to make the connection that when I sign cookie, I get a cookie. He would not make that connection.

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I see you've met my daughter! Our daughter is also classic ASD (not Asperger's). I should take back what I said about no speech delay - she did have some, both expressive and receptive, but mild. Still does have mild speech delay but it's getting better. Learning to read has been huge in helping that. But she always had better speech than expected for classic ASD. But, you otherwise just described my daughter at diagnosis:

- struggled with cause/effect
- had some stims
- no concept of fear/danger (she too was a runner)

- reduced sensory input for pain
- struggled with eye contact (could make brief eye contact sometimes, but could not sustain it at all)
- didn't know how to make believe
- had areas of delay on her assessment, and yet her spatial testing, problem solving etc... literally tested off the charts. She completely topped out.

 

Many of these have improved significantly - she's no longer a runner, and now she's actually sometimes has too much fear (anxiety has kicked in now that she's older), eye contact is much better, same with make believe etc... But the social aspect of cause/effect is still a struggle.
 


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#27 Amy Elizabeth

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Posted 07 August 2017 - 08:06 AM

I see you've met my daughter! Our daughter is also classic ASD (not Asperger's). I should take back what I said about no speech delay - she did have some, both expressive and receptive, but mild. Still does have mild speech delay but it's getting better. Learning to read has been huge in helping that. But she always had better speech than expected for classic ASD. But, you otherwise just described my daughter at diagnosis:

- struggled with cause/effect
- had some stims
- no concept of fear/danger (she too was a runner)
- reduced sensory input for pain
- struggled with eye contact (could make brief eye contact sometimes, but could not sustain it at all)
- didn't know how to make believe
- had areas of delay on her assessment, and yet her spatial testing, problem solving etc... literally tested off the charts. She completely topped out.

Many of these have improved significantly - she's no longer a runner, and now she's actually sometimes has too much fear (anxiety has kicked in now that she's older), eye contact is much better, same with make believe etc... But the social aspect of cause/effect is still a struggle.

Yes! Very similar to my daughter. The social anxiety and processing of symbols (reading/math) are now her biggest challenges. She is socially delayed, but I am not worried about it. I was socially delayed but eventually caught up (and managed to bipass some of the really annoying stages a lot of teenagers go through). Narrating was HUGE for her. It took time for her to learn to get good at it, but it really helped with vocabulary and comprehension (probably language too)...to the point she exceeded me at that age even though I was much higher functioning (more in the Aspie range). She still gets words confused occasionally (sometimes I still get called dad), but for the most part, she has made soo much progress! If I recall 8 was when I really realized "Hey! She can DO this!!!"... Meaning school, talking, learning to take care of herself, etc. She's just working from her own timetable. :-)

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#28 OhElizabeth

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Posted 07 August 2017 - 12:46 PM

AE, can you tell us more about how you worked on narrations with pictures? I did some with my ds, but it was very, very slow-going and not clicking the way I was trying. (read the fable, break it into three steps, draw a picture for each step) He didn't get a click, even with that. That's why I backed off. Now we're going back at it with pictures that are already done for us. We're doing the whole workbook just ordering the pictures and pasting the sentences to go with them, then I thought we could go back through it and do it expressively, making our own sentences... 

 

How does your ds do at narration? Did he ever get that click or is it still a work in progress? 

 

That's amazing the effect the celiac had on your kids, wow. 


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#29 Amy Elizabeth

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Posted 07 August 2017 - 01:07 PM

Any kind of stress can have a HUGE impact on Autism symptoms. Even yeast overgrowth can cause some major symptoms!!! (dd had a lot of systemic yeast and it was really hard to figure it out because it is on the inside)

On the narrations... We started dd at her receptive language level. I would read a story, and then ask her to draw a picture of what they got out of it, and then we would talk about it.

My ds does not like to draw at all so we often did his verbally. We started him with 1 minute stories because his comprehension was so bad. I would ask him to tell me what the story was about, and then we kind of "popcorn narrated"...he would tell me what he remembered and I would fill in the gaps (he also often didn't go in order). We did one or two narrations every single day for months like that. Eventually we moved on to Usbornes Farmyard Tales (very simple concrete storyline and low receptive language level... Too many books today are too abstract... Lots about feelings). After that we moved on to simple picture books. Each step up was a struggle, but we kept at it every day and eventually we would reach a point where I could tell he was enjoying the stories! And that the point where I knew we would soon be ready to step it up a level. As his comprehension improved, his narrations have improved. It takes time... A little bit every day....and a lot of listening and being encouraging. But it has made a HUGE difference!

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#30 OhElizabeth

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Posted 07 August 2017 - 01:54 PM

Why does your ds not like to draw? You're right, I hadn't made the connection, but if you're not drawing for real life or have representational delays there (I'm making that term up), then it isn't a tool you have for your academics. Timberdoodle sells doodling books, and I had a worker do Doodles with him each session. At first we got just really primitive scrawls or the same thing (a bat, whatever) in every picture, every page. They kept it low key and didn't freak or fuss, and now it's a preferred thing for him. It's just still really primitive. Like I take him sketch books to church to busy himself, and without the prompt of the doodling book he won't draw anything. He'll scrawl the whole page blue, punch repeated holes, whatever, but he doesn't draw anything. 

 

There's clearly a developmental step I'm missing there, hmm.

 

What's a one minute story? I think I know what you mean, but I need an example.

 

Ds' comprehension is funny. The SLP finally coded him f80.2, receptive/expressive delay. Just for his own pleasure, he'll listen to audiobooks all over the place. If I really want him to listen and comprehend, I take it way down. Like right now I read aloud to him from the NIrV, which is supposedly a 3rd grade reading level. It has very short sentence structure and simplifies abstract words into phrases. So instead of "do not covet" it will say "No not want what someone else has"... With that level, he can stay engaged, answer some basic questions about predicting or inferences. I don't ask him to narrate it. It's a problem for him to narrate and it doesn't fit with my goal at that point (reading and engaging with the Bible, going to bed peacefully, thinking healthy thoughts). It's not the goal, so we don't work on it there. 

 

That's a really good point that basically we're going to take the narration material down to his receptive language level and move forward. And I think I *knew* that, in a way, because the IS (intervention specialist) had said to work on inferences, etc. using material at that language level. She said to take him down to 1st grade language material for anything where we're working on stuff. She said she would make custom materials, because he's so all over the place. The ps didn't care about narrative language for his goals. Actually they were doing their darnedest to deny us language goals in the IEP, sigh. Double and triple sigh.

 

So you're saying we go down to that level and do narrations from that level. I thought about doing it with WWE. That's what WWE is set up for, obvliously, and it has scads of material in every level, a whole year's worth. It might be the right idea. SWB's stuff is always so abrupt. I don't know. Like you're saying, even if it's labeled for a particular grade, the language might not be appropriate. What *length* were you using? Or did it vary? 

 

It sounds like WWE would not be at all appropriate. You're saying to go back to something really concrete, like the little small kid books, something simple... Oh, that's what you meant by one minute stories. I've just gotta figure out what those are. I found the Lobel fables, but those are more advanced and abstract.



#31 OhElizabeth

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Posted 07 August 2017 - 01:59 PM

Oh, I get it. You're just saying back up to something so simple that he CAN narrate it, duh...


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#32 Amy Elizabeth

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Posted 07 August 2017 - 02:20 PM

Why does your ds not like to draw? You're right, I hadn't made the connection, but if you're not drawing for real life or have representational delays there (I'm making that term up), then it isn't a tool you have for your academics. Timberdoodle sells doodling books, and I had a worker do Doodles with him each session. At first we got just really primitive scrawls or the same thing (a bat, whatever) in every picture, every page. They kept it low key and didn't freak or fuss, and now it's a preferred thing for him. It's just still really primitive. Like I take him sketch books to church to busy himself, and without the prompt of the doodling book he won't draw anything. He'll scrawl the whole page blue, punch repeated holes, whatever, but he doesn't draw anything.

There's clearly a developmental step I'm missing there, hmm.

What's a one minute story? I think I know what you mean, but I need an example.

Ds' comprehension is funny. The SLP finally coded him f80.2, receptive/expressive delay. Just for his own pleasure, he'll listen to audiobooks all over the place. If I really want him to listen and comprehend, I take it way down. Like right now I read aloud to him from the NIrV, which is supposedly a 3rd grade reading level. It has very short sentence structure and simplifies abstract words into phrases. So instead of "do not covet" it will say "No not want what someone else has"... With that level, he can stay engaged, answer some basic questions about predicting or inferences. I don't ask him to narrate it. It's a problem for him to narrate and it doesn't fit with my goal at that point (reading and engaging with the Bible, going to bed peacefully, thinking healthy thoughts). It's not the goal, so we don't work on it there.

That's a really good point that basically we're going to take the narration material down to his receptive language level and move forward. And I think I *knew* that, in a way, because the IS (intervention specialist) had said to work on inferences, etc. using material at that language level. She said to take him down to 1st grade language material for anything where we're working on stuff. She said she would make custom materials, because he's so all over the place. The ps didn't care about narrative language for his goals. Actually they were doing their darnedest to deny us language goals in the IEP, sigh. Double and triple sigh.

So you're saying we go down to that level and do narrations from that level. I thought about doing it with WWE. That's what WWE is set up for, obvliously, and it has scads of material in every level, a whole year's worth. It might be the right idea. SWB's stuff is always so abrupt. I don't know. Like you're saying, even if it's labeled for a particular grade, the language might not be appropriate. What *length* were you using? Or did it vary?

It sounds like WWE would not be at all appropriate. You're saying to go back to something really concrete, like the little small kid books, something simple... Oh, that's what you meant by one minute stories. I've just gotta figure out what those are. I found the Lobel fables, but those are more advanced and abstract.

My daughter had great fine motor skills and would draw pictures when she wanted bacon for breakfast but couldn't remember the word. My son does not have great fine motor so that was not a strength we could utilize (that was the whole point of drawing narrations... Using her strengths to help strengthen her weaknesses). My son does daily fine motor work, but I don't make narrating more frustrating by making him do it using another weak area! Make sense?

These were the One Minute stories we used. They were the best I could find at the time. https://www.amazon.c...k/dp/B00E5R1CEM

We had stories we read but didn't narrate, and my daughter loves listening to audiobooks even above her comprehension level... It helped her fall asleep. Bible was challenging though because it is rather abstract. When they were really small, we started celebrating Jewish holidays (it occurred to me that God taught people coming out of slavery about himself using holidays and who needs more remedial education that someone coming out of slavery? That's when my dd finally got the idea "God made the world".... She needed to participate in it. I assume you could do that with Christian holidays too, but the New Testament as a whole is not as concrete as the Old Testament... Hoping you see what I am trying to say. I think in pictures and have to translate my pictures into words so it doesn't always translate well.

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#33 OhElizabeth

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Posted 07 August 2017 - 03:07 PM

Yes, now that makes a lot of sense! You're right, drawing right now would not be a strength for him. Building it with legos or demonstrating it with playmobil might be.

 

Those are the One Minute stories I found when I googled, and I see why they would work! 

 

Your use of the Jewish holidays is interesting, and I like your thought process on all the people would have been catching up with as they came out of slavery, interesting. Yes, it's a marvel when our kids finally GET something, like really get it. You can laugh (or be horrified), but I read my ds Revelation. I wanted him to get that there's an end, that it matters, that God's OPINION matters about things. It seemed to connect, lol. Then we worked backward and learned the 10 Commandments. :D


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#34 Lawyer&Mom

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Posted 07 August 2017 - 03:28 PM

OP, I'd really be interested in knowing more about your Ehlers Danlos Syndrome. How does it present and do you think it is connected to the autism? I'm autistic and I've wondered about Ehlers Danlos myself. I've only recently heard about it. I'm double jointed and I have digestive issues, but I don't think I have any real problems that would suggest pursing a diagnosis... Anything you are comfortable sharing would be of great interest.
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#35 kbutton

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Posted 07 August 2017 - 07:33 PM

I am one of the people with a 2e kid who has ASD and missed language issues. I highly recommend some narrative language testing (like Crimson suggested, or the Test of Narrative Language). It's very interesting. I also really recommend Test of Problem Solving.

 

Pragmatic stuff is going to be iffy at this age--it might or might not show a clear problem, but it will eventually. Even with therapy. 

 

I think I posted this company's stuff in your other thread, but I wanted to put it here again. They have some autism specific stuff and things for a variety of age-groups. It's all complementary and interrelated, and the Social Thinking lady wrote a forward or introduction to some component of the programs. https://mindwingconc...-grammar-marker


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#36 kbutton

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Posted 07 August 2017 - 07:35 PM

Seconding that narrating something new vs. something you hear is not the same. My son can paraphrase but *not* summarize, for instance. He can tell a story, but he might not necessarily be able to tell a story that has parameters, and it will be missing a lot of features. It's all kind of quirky, but it's a big deal. A really big deal. He can write beautiful and amazing sentences that are grammatically complicated and pretty, but he can't string things together. At all. 

 

Edited to add *not*


Edited by kbutton, 07 August 2017 - 07:39 PM.

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#37 mshanson3121

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Posted 07 August 2017 - 08:03 PM

OP, I'd really be interested in knowing more about your Ehlers Danlos Syndrome. How does it present and do you think it is connected to the autism? I'm autistic and I've wondered about Ehlers Danlos myself. I've only recently heard about it. I'm double jointed and I have digestive issues, but I don't think I have any real problems that would suggest pursing a diagnosis... Anything you are comfortable sharing would be of great interest.

 

Hah, this may turn into a novel :) So, 3/4 in this house are suspected of having it, and it affects all of us differently, so I'll break it down by person:

Myself:

- Joint hypermobility
- Dysautonomia issues (POTS which was severe during pregnancy), Raynaud's Syndrome, facial flushing etc...)
- Mild joint pain (which again was severe during pregnancy)
- Mild TMJ

- Myopia

- Dental crowding (resulting in many years of orthodontics including 6 extractions)
- Irritable Bowel Syndrome (which can actually be part of dysautonomia)
- Spider veins and likely going to end up with early varicose veins as I have a large vein in my leg that is starting to bother me
- Mildly overly stretchy skin
- Overly sensitive skin (bandaids scar me), dermatographia etc... I also have a subcutaneous spheroid in my arm
- Allergies
- Easy bruising (though not to the extent of some)


DS, 10 is the most mildly affected, but the most hypermobile:
- Joint hypermobility with perhaps mild hypotonia, poor stability
- Sensory Processing Disorder, especially with regards to proprioceptive and vestibular input
- Fine motor issues
- Mild GI issues (reflux, indigestion, extreme flatulence etc)
- He also has mildly overly stretchy/smooth skin, dermatographia
- Hyperopia
- Some dental issues pertaining to late teething/odd patterns
- Raynaud's Syndrome
- Allergies
- Gorlin's sign (can touch his tongue to his nose)

DD, 7, probably the most severely affected:
- Joint hypermobility
- Severe GI issues (reflux, motility issues, severe constipation etc)
- Urinary incontinence
- Probable dysautonomia (cardiac arrythmias/possible POTS, Raynaud's Syndrome, Livedo Reticularis etc...)
- Hyperopia
- Severe dental enamel issues (by age 6 she had already had 20+ fillings, 2 abscesses, an extraction plus root canal with crown)
- Insomnia issues
- Mildly stretchy/soft skin, dermatographia
- Joint pain (mostly in her legs, they get fatigued/pain easily)
- Dental crowding issues (braces are a definite and she's going for 4-5 extractions later this year for spacing issues)
- Severely sensitive skin
- Easy bruising (and they take a looong time to heal)
- Soft nails that split and peel
- Brittle hair that breaks easily

 

That's off the top of my head. There may be more that I'm forgetting.

As far as a connection between ASD and EDS, I know some people have suggested there may be one, but I'm not sure there's any real hard evidence yet. My daughter has ASD, but my son, myself and my mother (whom we inherited this from), do not.


Edited by mshanson3121, 07 August 2017 - 08:11 PM.

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#38 OhElizabeth

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Posted 07 August 2017 - 10:06 PM

I thought most people could touch their tongues to their nose. Oops. 

 

You can also google site search EDS. Even though people aren't replying here, it has come up in the past. You'd use the terms and site:welltrainedmind.com  Some of the people still frequent the boards, so then you could pm them. :)



#39 Lawyer&Mom

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Posted 08 August 2017 - 12:05 PM

This is fascinating. I've gone to the EDS forums before, but it seemed to be filled with people who had very severe issues, so it was hard to extrapolate what a milder condition might look like.

Let's see, I've got:

Joint hypermobilty.
Nearsighted.
Wheat and dairy sensitivity.
Sensitive skin.
Somewhat stretchy skin.
Missing teeth. (One adult molar missing, and only one wisdom tooth present.)
Impacted incisors.
Mild TMJ.
Mild Mitral valve prolapse.
Sometimes light headed after standing up or getting out of a bath.

It never occurred to me that any of these things could be related...

I also have unilateral hearing loss probably since birth. I wonder if that could also be related?

Again, thanks for sharing. I'm going to have to do some more googling!

#40 ElizabethB

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Posted 08 August 2017 - 12:29 PM

:grouphug:

 

Good luck with whatever you decide next year!

 


Edited by ElizabethB, 08 August 2017 - 12:38 PM.


#41 mshanson3121

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Posted 09 August 2017 - 06:41 AM

This is fascinating. I've gone to the EDS forums before, but it seemed to be filled with people who had very severe issues, so it was hard to extrapolate what a milder condition might look like.

Let's see, I've got:

Joint hypermobilty.
Nearsighted.
Wheat and dairy sensitivity.
Sensitive skin.
Somewhat stretchy skin.
Missing teeth. (One adult molar missing, and only one wisdom tooth present.)
Impacted incisors.
Mild TMJ.
Mild Mitral valve prolapse.
Sometimes light headed after standing up or getting out of a bath.

It never occurred to me that any of these things could be related...

I also have unilateral hearing loss probably since birth. I wonder if that could also be related?

Again, thanks for sharing. I'm going to have to do some more googling!

 

Do you have a diagnosis of EDS? If not, you definitely should see a geneticist, as I would say with 99% certainty you have it. Mitral Valve Prolapse is a classic symptom of EDS, especially combined with your other symptoms.



#42 Lawyer&Mom

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Posted 09 August 2017 - 10:15 AM

Do you have a diagnosis of EDS? If not, you definitely should see a geneticist, as I would say with 99% certainty you have it. Mitral Valve Prolapse is a classic symptom of EDS, especially combined with your other symptoms.


I don't have a diagnosis. Do you think it is helpful? I wish I had known before my preterm baby, but it's too late for that now. (She's two and doing just great.)

#43 kbutton

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Posted 09 August 2017 - 02:49 PM

How does one go about finding a geneticist that will check adults? It's very hard here--they will check only children at the local EDS clinic. I really think we have connective tissue stuff going on more widely in the family (from multiple branches), but my kiddo tested as having a different connective tissue disorder that the rest of use are unlikely to have (ruled out via genetic testing--we'd have to be genetically mosaic to have passed it on to him, which is super rare). Once my son's diagnosis was confirmed and we were ruled out as having it, there was no further digging into family history to see if the rest had something else, unfortunately.



#44 OhElizabeth

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Posted 09 August 2017 - 04:03 PM

Kbutton, will 23andme catch what you're wanting?



#45 kbutton

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Posted 09 August 2017 - 08:19 PM

Kbutton, will 23andme catch what you're wanting?

 

It does not appear to. 



#46 kbutton

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Posted 09 August 2017 - 08:32 PM

I was looking at the EDS site to see what genes are tested, and it appears the diagnostic criteria got a really big overall in the last few months. I am wondering if some of the people I know who are diagnosed with EDS might be reclassified as having a hypermobility syndrome disorder instead. 

 

https://www.ehlers-d...rs-danlos-info/



#47 mshanson3121

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Posted 09 August 2017 - 10:09 PM

I don't have a diagnosis. Do you think it is helpful? I wish I had known before my preterm baby, but it's too late for that now. (She's two and doing just great.)



Definitely. EDS is typically degenerative, so it's important to have a doctor who can be proactive in your care.


  

How does one go about finding a geneticist that will check adults? It's very hard here--they will check only children at the local EDS clinic. I really think we have connective tissue stuff going on more widely in the family (from multiple branches), but my kiddo tested as having a different connective tissue disorder that the rest of use are unlikely to have (ruled out via genetic testing--we'd have to be genetically mosaic to have passed it on to him, which is super rare). Once my son's diagnosis was confirmed and we were ruled out as having it, there was no further digging into family history to see if the rest had something else, unfortunately.

  


Honestly I'm not sure. We're Canadian, and the clinic we're going to treats adults and children. Honestly I would just Google lol. But you could also try contacting the national EDS Foundation. I'm sure they could help you find one. Or join one of the EDS Facebook groups.


Kbutton, will 23andme catch what you're wanting?


No it won't.
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