Grammar ideas for teenager I'll be helping who may be ASD and is basically raised by her sister . . .

[Storygirl]

I saw your update, and I'll come back to respond when I have a chance. We will be pretty busy here with holiday things for the next few days.

The IEP is a fluid document, meaning it can always be changed, even between the annual meetings, if someone has concerns and asks for an IEP meeting. But once something is agreed to, it would probably need new information or data or concerns that had not been addressed, for the school to be willing to revisit.

I agree with PeterPan that it's important but hard to balance both the long view of the student's future and the short term battle for more intervention. This summer, a speech therapist that we were consulting with privately told me (about my DS) that my concerns were valid and not to let the school try to steer me to think that they weren't, but also reminded me that growth continues to be possible after graduation and after the teenage years, and the progress in developing skills doesn't end with the end of high school.

So even if there are only a couple of years left for E in high school (is she a junior?), she will be able to continue to grow. Your best way to help might be (1) to help her get connected with the vocational rehabilitation to learn job skills,
(2) help the family see if she would benefit from any services from the county board of developmental disabilities, and
(3)zero in on the academic areas to tutor her in (I'm thinking you are planning to tutor her, maybe?).
Basically, help set up some ways for her to get help outside of what the school provides.

Her school seems set in what they are willing to do to help her, and you are outside that battle, though you've been trying to help. Another way you might help with the IEP situation is to research whether an IEP advocate would agree to work with them pro bono, because to enact any changes to the IEP will require someone who really knows the ins and outs of the process. As much as you want to help, I think they need an expert.

Not to diminish in any way what you are doing to help! You have been amazingly invested, and that has made a big difference, I'm sure! Just that you personally can't solve all of these problems, but you may be able to connect E and her sister to additional resources that may help her build a future beyond schoolwork. I'll read through your description of what her IEP says again, when I have some more time.

[Classical Katharine]

@PeterPan What a Christmas present--thank you for taking the time to write right before the holidays! 

@PeterPan, the standard deviation on Woodcock-Johnson is 15. She has the one 20-point drop and a few more along the lines of 10 points. Thank you for the confirmation that in a sense, this is to be expected. That is helpful to me. She would be expected to fall further and further behind, and, I assume, it is impossible to know if she has fallen behind by only the amount that was unavoidable . . . but in one sense, that's water under the bridge. The school does care and effort has been invested; no way to know if all has been done that could have; the future lies forward and not behind, so we can only look ahead and seek to benefit her maximally going forward--whatever form that will take. 

Thank you for the vocabulary links! I knew that what she'd need is a program where we start in the right place AND where she gets enough repetition and enforcement. (Learned that writing a curriculum.) So the links you gave to something specially designed for students in her situation is very valuable. Thank you. 

Thanks also for the confirmation that the social skills / humor help could reflect ASD or something else--that both of those needs could occur in others as well, not only on the spectrum. And agreed--I'm glad they are working on it, as J. is also, in her own way. I still need to ponder whether E. would benefit from finding out for sure whether she is on the spectrum. It will cost them either money, or time and effort, or both, to find out, and I'm unsure yet how much more they would get out of school or life by having that verdict in her case. The school doesn't see it, so it's at least debatable. She already qualifies for services, so maybe it's not necessary. Have to ponder that one. 

Also thanks for helping me understand about how the school would have used a paired set of tests, hence all WJ. I was only interested in the "fluid reasoning" b/c of a thread elsewhere where a Mom of a special needs son felt that the insights she gained into his learning styles from what I guess must have been the WISC helped her to perceive he needed a different learning approach to math, and when she made a change, he learned much more rapidly. Maybe at some point the family will benefit from additional testing but it's good to know the WJIV is telling us a lot as it is.

I also very much appreciate your point about the long view. I am sorry your health was affected by the intense efforts you put in. I appreciate your reflections on that. It is deeply encouraging to me, as, by grace, I thought to say the something similar to J. the other day. I am trying to help her understand both that E. has challenges that go beyond hers when she was in school--J. did need remedial help in math, but I am sure her IQ is way above E.'s--and that E. has been learning, will continue to learn, and that after the sprint to understand the IEP, we need to settle into a pace we can all maintain, b/c these issues won't go away, progress is still possible, and this is a long-term project for all of us. God made E., she's precious, and she can have a purposeful and good life--time may have been lost and yet it's not too late.

I also think you are right and that we need to supplement, supplement, supplement. The story of E. is one of a low-language environment, and no dominant language, either. J. has had so many good instincts--get E. out to church, hear preaching, meet people, have conversations, read books, talk about them. Some of what you've said about narrative language, I think J. has stumbled on with good sense. She's drawn E. out, encouraged her to share more, use more words, tell her more. You have given us terms for things that I can use to learn more and help us do this better.

I've had new ideas about people I think E. would connect well with. I fear that young people her own age may not have the maturity to relate well to someone their own age who is academically far behind them. It makes me sad--she said to me once she wants to make friends her own age. Sigh. But I've thought of someone five or seven years older who is also kind, female, quiet, a little shy, went to public school, had some struggles with academics herself, likes to be at home, doesn't have a wide circle of friends herself. They might be very good for one another--might feel comfortable with each other--might help one another by learning to talk about their days and their activities together. J. can't do it all. 

Well, I think that's it for the moment. I've got research to do and you've given me some great leads. 

Thank you so much. You've been very generous with your time. Merry Christmas!







 

[Classical Katharine]

@Story girlYou and @PeterPan have given me a wonderful Christmas present! Thank you so much for taking the time to reply at a busy time of year. 

I completely agree with your three goals and it is encouraging to see you identify them as priorities. 

Yes, E. is a junior. 1.5 years to go!

I also agree that I couldn't on my own act as a parent advisor to this family. The learning curve is steep. At this point, one of the factors in whether they would even choose to make further noise about the IEP is that the Mom is not familiar with this world and with the process, and had a rough time when it comes to education--in her home country her school was taken out by armed insurgents of some kind and she never attended high school. J. and E. have to navigate this situation respectful of their mother and what is and isn't important, is and isn't scary, etc., to their Mom.

J. knows that when E. turns 18 E. will have rights she doesn't have now and if it would ever make sense to use outside help, I think it would be once E. turns 18, with maybe some prior work done like outside testing or finding an advisor. My husband and I will consider if we can help with that, but we need to learn more about who is good locally.

I also need to navigate this sensitive to J. and what is and isn't a big deal for her. I respect her and love her. She's still young and this world is intimidating for older adults with a stronger academic foundation than she has had. She's doing a great, great job. But I need to help in ways that fit her and her family and not in ways that don't. So we have some ground to travel together. 

I think our next few steps are clear--I join in in January to language work and social enrichment, and I help J. see the value of the connection to the vocational resources for those with disabilities.

J. is also navigating conflicting feelings and new information when it comes to the word "disability." She has a strong work ethic and knows that's important. She also believes in E. and believes in her potential. Anything that sounds like saying "she can't change" doesn't sit well with her, so I've had to help her see that "disability" doesn't mean that--it does mean, though, that some things will be harder for E., a lot harder. So yes, hard work will help-- for E. to now understand and be more motivated is excellent--but she may or may not someday be able to do all that J. does. I think J. knows that, but it's a lot to absorb emotionally.

I've also told J. there is nothing wrong with accepting help vocational help from the state. It's completely consistent with having motivation and a good work ethic to make use of that kind of resource. I think sometimes J. doesn't want to start a ball rolling where she thinks she won't like the outcome. My view is more "we don't know what the vocational agency would say unless we ask." And also, they can't make you do anything. You don't have to do what they say. You find out what they have to offer and see if it sounds helpful. If you have had experience with this aspect already and can share anything that it might be helpful for me to share with J., that would be wonderful. 

I think you may have asked, BTW, whether E. is learning to drive. She is. I hope she'll be able to pass the written test. But the school does seem to have her in Driver's Ed, or maybe it's the family. I think it will be really important to her to be able to drive so she doesn't have to depend on their Mom for transportation to work opportunities. 

I wrote some other things about E.'s social landscape in my answer above to @PeterPan, so I won't repeat them here. 

So I have research to do, but it's been so helpful knowing your thoughts and others'. I feel much more oriented and much better able to help J. and E. decide how they would like to proceed. 

Have a wonderful Christmas! When you surface after that, I'll look forward to connecting again. But you've been very generous already, and I'm very grateful. 



 

[PeterPan]

1 hour ago, Classical Katharine said:

The school doesn't see it, so it's at least debatable.

You're not actually understanding what they're saying. They likely are NOT TRAINED on the ADOS. The ONLY person on that team legally able to "diagnose" ASD in most states is the psych. Now technically in some states an SLP can diagnose, but an SLP is not doing to do that in isolation. Some schools in our state have ADOS trained IEP teams, and they do a MUCH better job of diagnosing and catching autism when they see it, because the WHOLE TEAM got trained on what it looks like and how to recognize it. But just like at our school (no ADOS training), you're going to have a psych and an "autism specialist" who is typically an SLP with a brief certificate (inflated sense of what they can do, actual knowledge still woeful). Everyone else is just looking at the criteria and their own experience (other kids in the school they knew who were classified as ASD, etc.). This results in a lot of misconceptions when your kid does not look like the ASD2/3 kid in the autism classroom.

So technically when a school is saying not ASD they mean they do not see ASD as affecting her ability to access her education. That is ALL that it means. It DOES NOT mean that it would not be diagnosed privately as a medical diagnosis. It means as an educational diagnosis they are not giving it.

In our extremely picky school district, kids privately diagnosed with ASD1 will *NOT* receive an IEP for their ASD. They have ASD, but they will not get it as an educational diagnosis, because our school has decided that since there is no concrete guidance from the dept of ed that they need a line of significance. So ASD2 and 3 *may* get ASD as their disabling conditions IF they also have test scores showing significant effect on verbal, ie. "failing" a language test. So the CELF Metalinguistic, a test of narrative language, there are a number of tests, but you actually have to have 1.5 standard deviations or more of discrepancy in a significant number of sections on a language test to check the "significant effect on language" box at our school.

Does that mean that all those other kids were improperly diagnosed on the spectrum? No! Usually what it means is the school doesn't OWN the test that would qualify them. For real. And it's convenient, because by not owning it the escape the problem of having to qualify them. 

There is this constant legal jeopardy in school districts and they have lawyers on retainer for these fights, sigh. In our state, the difference between these "tiers" of disabling conditions that  you might get can be HUGE $$$$$. 

1 hour ago, Classical Katharine said:

she said to me once she wants to make friends her own age.

This may come as she begins to work. She needs to hang with people she has something in common with.

She can also consider leisure activities and how she can use those to make friends, people she has something in common with. She may need some leisure SKILLS so she can pursue leisure activities to make friends. So for instance if you taught her to play card games, then suddenly friend groups with cards becomes open to her. I'm not saying that's right for her, but it's the idea. ANY activity she could learn or skill could become a way to connect with others. Walking on a treadmill at the Y a few days a week would net her friends. Volunteering at the shelter to pet cats and dogs would make friends. If she could learn to crochet or knit, she could make friends with that. (We have volunteer groups that crochet/knit/sew for babies.) Taking a job will help her make friends. 

There are universities that have college experience programs that are not really intended to result in a degree. One of our big flagship universities in our state has a program like this. I think they call it College Exploratory or something like that. And again, it lets her have some common experiences with people she might have something in common with. 

If she's religious, there are non degree, not especially academic, Bible programs that are 1-2 years meant as sort of a gap, having an experience, making friends, a time to grow. 

[Classical Katharine]

@PeterPan, thank you! 

That's very helpful about dx--that they may not even own the testing supplies, or might not have someone on call with the required degrees, etc. 

And about skills and friendships, great ideas. I've actually taught J. to crochet! Maybe J. can teach E., or maybe I can at some point. I think her ferret offers some possibilities at least for conversation with other animal lovers, and I've wondered if she might enjoy working in a pet shop, or, now that I think of it, in a rescue center. She might have "the touch" that all animals respond to. 

More later, but thank you again, and Merry Christmas to you and your family!