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I am not sure where to go from here. When do you stop trying to fix things and just let your beloved child fail?

My DD18 has some kind of mysterious debilitating writing issue that is about to ruin everything for her. She can write very well but not on cue, that was the problem that got me searching for answers 2 years ago and led me here. We had the full eval and received a diagnosis of ADHD (I) and PDD-NOS (Asbergers)...LOL spell check just came up with "Beefburgers"

Anyway, she also has suffered from serious insomnia, chronic stomach pain, depression, lack of organizational skills, motivation and anxiety. If any of you remember, last year she was admitted to an awesome college that she desperately wanted to go to. We knew she would love it there but we worried about the writing issue. She tried ADHD meds over the summer, found a dose that seemed to work and went off to college.

Last semester she did great for about 2 months, then had an existential depression crises when 2 classmates with whom she had really bonded (after years of not having friends) left the school suddenly. She only managed to pull through by turning in a couple of very late papers at virtually the 11th hour. She informed me that she had quit taking the meds because they stopped working 2 months into the semester and she wrote both essays without meds. She is extremely happy at school for the first time I can remember, she has real fiends, is doing much better organizationally and is just doing so well in many ways but we are now at the end of the Spring semester and she is in the same boat or worse as last semester. She has turned in no written work at all.

The Assistant dean has told me that she will not be able to return this fall if the large freshman essay was not turned in (and it wasn't). My DD seems to have no appreciation for the reality of the situation and she insisted that she will be going back in the fall. Looking back, it seems that things fell apart about the time she quit taking the meds.

My Husband has made it clear that she may not move back in with us (in his house) if she is not going back to the college this fall (long story, but I feel that he is not being unreasonable in this). Her other options are a bit bleak and she is not ready to be out on her own. I fear if she moves in with her grandmother or her father she will become isolated and depressed and just waste away on the computer.

She agreed to try meds again and go to counseling "if that's what you want". The college has a contract with a local Psychiatrist but she has way too much anxiety to go to a strange place to see a strange person so far away from home. I have looked around for local counselors but it seems the recommended ones have no available appointments for months and I don't even know where she will be living. I thought about getting an apartment for her in the town that I work in so I could check in on her but that would compromise my ability to pay the tuition should she get to go back. Also, while part of me feels like I haven't done enough, I don't want to be an enabler by constantly coming up with the "Plan B" when maybe she just needs to fail and pick herself up. I really wish we had been able to try CBT or some kind of therapy with the meds but we didn't have time last summer.

I appreciate any thoughts on this, I am really not at all sure what to do. I feel like a bad parent either way neglecting or enabling - sigh!

Gosh, I am soooo sorry you and your DD are having these problems. I am also sorry I can't offer any useful commentary even though we may be where you are in a few years--have the same diagnoses at this point (and then some! . Do you think her taking a year off would help, or just prevent her from ever graduating (and thus also preventing her getting a better job than she might otherwise)? I have heard a number of NPR segments in the last couple of months about how college might not be the best option for some kids (given the current hiring rates of recent grads),
especially if they have skills in other [more practical?] areas.

Best of luck, and hugs, to both of you; I very much
hope you [both] get what you need.

It is likely that a lot of this is related to the executive functioning, anxiety, and attentional problems that go along with Asperger's. I somehow doubt that those are going to go away with a "sink or swim" approach.

Have you considered seeing if she would qualify for admission to CIP in addition to counseling and meds?

Oh, Nik, this is so hard. I'm so sorry to hear that she's struggling.


I don't know either, but I don't think you're there yet. Here's why: you haven't had time (since the diagnoses) to get her stable and working in her own interests yet. I'm not saying that will be easy, but I think if you can commit to helping her get there with lots of support in the short and medium term, she will be more likely to be able to finish her education and hold a job and be independent in the longer term.


It is very, very common for people on the autism spectrum to have problems with writing, ranging from organizing their thoughts in an orderly way, to physically producing the writing, to being too anxious to turn it in, to not understanding the power relationship with teachers that makes the deadline or the grade matter.


Have you had any discussions with the dean about the disabilities, about how new the diagnoses were, about the existential crisis?

I think if she were my kid (and keep in mind, mine is 9, we're not there yet), I'd probably ask them to put her on medical leave rather than kicking her out of school, and then get going on therapy to remediate the anxiety and writing problems and get her stable on the meds again. It is going to be some serious work, but if she wants to invest the effort she can learn to manage these things.


My feeling is that with those disabilities, if you leave them unremediated, you vastly increase her chances of getting into more trouble, even trouble of a kind that endangers her. She has made it clear that she isn't responsible enough to live on her own. If she can't come home, she needs a sheltered, supervised living situation of some kind where she can work on the independent living skills in a productive way. You can't trust that she will learn these skills without someone teaching them to her.

You could contact your state or local autism society and ask for help. You could also talk with Social Security and other organizations for people with developmental disabilities, and start applying for funding and maybe looking into supervised housing opportunities.


Can you travel there to accompany her? Is there a supportive teacher or residential adviser who could? Is this a "can't" or a "won't"?


I don't think it's fair at this point to let her fail entirely. It *is* fair to say you aren't paying any more tuition until she's shown that she has the skills to succeed in college; but the overall life failure (living on her own, becoming unable to function) is not one I'd let a young adult with this collection of disabilities experience unless there's no other option.

I don't think it's enabling if you help her learn what she needs to learn. You could set parameters under which she can return to college, and she knows she has to work on mastering those skills. That's not letting her do whatever she wants or feels like; it makes her accountable for her learning and eventual success.

I also think the odds of her mastering these skills through failure are virtually zero. She doesn't really have bootstraps to pull herself up by, no matter how smart she is-- she is going to need help to develop the self-management and other skills.

Hope that helps. I really feel for you.

DeeDee

What may be defined as failure to you may be utter relief to her. And if you are more invested than she is in keeping her in college full time away from home, she is going to continue to need rescued. Believe me, I'm speaking from experience. IF it can be fixed so that she can return and have another chance, I think the conversation that might be the most helpful is the one where she feels just as safe saying it is too hard to go back as it is to say she wants to try again.

My daughter was diagnosed with ADHD this year after losing her scholarship and killing her GPA. She has decided to continue to go to college - on her terms. She is only going part time while working part time. And for her, it has finally given her success - on her terms.

I'm not saying you shouldn't help her get the help she needs, but if she isn't in the driver's seat on this, she'll continue to fail and you continue to rescue and push her forward,

Then again, this is only my opinion, and I could be totally wrong,

I've been there. Not with an actual writing disorder, but depression, anxiety, totally falling apart when an essay is due, etc.

Yes to CBT, it really really really is a great thing. No to your husband's stance on not letting her live at home again. Does he want her to be homeless? Feeding her and giving her shelter and a gentle push to get up and go to her job at Walmart and to her therapist isn't being an enabler.

But, maybe it's not the right time for her to be doing this. Some time, some undemanding work, let her hormones settle down, mature a bit, let her find a purpose for the study and she may well do some study later in her life.

I’m not sure; I guess it depends on how well that year is spent. I do fear that taking her out of the environment that has been so healing for her would be a bad thing unless the motivation to go back is enough to keep her moving in a forward direction and really work on her issues to prove she can be successful if they let her return.


She really isn’t ready for gainful self supporting employment at this point. While the notion of a degree leading to a great job in the end is nice; my goal for her at this point is to have an enjoyable, meaningful and stimulating experience with true peers that inspire her and lift her up while experiencing sheltered independence as we wait for the executive functions to catch up with the rest of her. The degree at the end is the bonus.


Well, this is the first I have heard of this program, on the one hand it seems great but the price YIKES! Also, the testimonies sound very much like my DD but the pics and descriptions seem to indicate a much higher-need population and that would really upset her to be put in an environment of higher needs students.


Yes, about everything.


This is where I am leaning as far as wanting to help with therapy/meds/remediation but I would have to find a way to support this without allowing her to fall back into her old ways (i.e. she moves in and lies about going to work/school/therapy, becomes bed-bound and depressed).

The school is apparently pretty lenient on students who petition to return when they show they have worked to address the issues that prevented them from returning the previous year. It seems that it is quite common for students to take a year off to sort personal stuff out and there isn’t a lot of stigma. She will most likely still get credit for the whole freshman year if she turns the paper in before returning and provided she didn’t get “F’s” this semester.


I offered to, she didn’t want that, she wants to wait til she’s home since it’s only a couple weeks. If she would just go to the counselor at school and tell them she wants to see the psych, they would take care of the rest. I don’t think its cant or wont, I think its sheer terror at the idea and denial of the immediate need.


The thing is, the very skills she needs most are developing by leaps and bounds at this college; she has matured socially and in terms of self confidence and independence by several years in just the one year she has been there. Writing and anxiety seem to be the culprits holding her back; I just fear that her motivation to succeed may go out the window once she is away from this environment that has been so positive for her. The whole delayed gratification thing is not one of her strengths and I don’t know if it could sustain her for a whole year away from real peers.


She would never go for that. She would sooner live in a trailer at her dads or move in with her grandma where she would have no expectations from anyone and no one telling her what to do.

Thank you so much DeeDee for your thoughtful responses, they are really helping me think through this.



I am really thinking hard on this, because I do feel like I am more vested than she is but I think for very different reasons than you suggest. I saw how my angry, barely functioning, near comatose child who had pretty much lost all will to live suddenly became a happy, engaged, social being - instantaneously upon setting foot on this campus, it literally was a miracle - we found her people at long last and they get her and she gets them. I lost that wonderful loveable happy energetic kid in a slow decline to the abyss that seemed to begin about 8 years ago.

She previously tried junior college and even a local university but they weren’t to her liking, she felt the classes were no different than high school at the junior college and she was so intimidated and anxious at the university that she never actually went into one of her classes because she was afraid of embarrassing herself trying to find a seat in the 200 seat auditorium. I tried the “maybe its not the right time for college” and “college isn’t for everyone” talks and she became very upset and asked if I had written her off, so I think in many ways she is in the drivers seat, she just cant reach the gas pedal or see over the dashboard ;-).



HOW DID YOU GET THROUGH IT????


I do think CBT sounds like a necessary component of the solution, I am having the hardest time finding someone in my area and on my insurance who does that and gets ADHD gifted and Aspergers.

She was really horrible to my husband, she pushed all of his buttons and pointed out all of his idiosyncrasies and hypocrisies and argued and refused to obey every rule etc. This is tough enough to deal with when it’s your own kid but I understand him being fed up and wanting to enjoy peace in his home. He left home at 16 and worked his way through college with no parental help so he thinks everyone should be able to do that, he doesn’t believe in her diagnosis and he thinks she is just lazy and manipulating me. I hope to have him visit the counselor once we find one and maybe they can help him understand.

Lol, she couldn’t get a job at Wally world! None of the smart kids could in this town, there is theory amongst them about that related to the profile you have to complete for the application…I don’t think she needs time, she has had a lot of that since I took her out of high-school at 15. I fear that more time and undemanding work will leave her uninspired and listless again. She needs to feel like what she is doing is meaningful.

I do plan to require that she work or volunteer as part of a full time program of getting it all together if I do end up finding a workable way to support her housing needs, now that she is 18, hopefully she will have an easier time finding a job!

I would have quoted and agreed with bringing her home for a year to get more grounded and not letting your husband insist your daughter move out and be grown before she is because of special needs and asynchronousity even if you have to hold her hand and walk her through the rough spot. But I can imagine the strain of a surly willful overgrown child. I was thinking about jobcorp because of the age range and they provide housing so it's not completely on her to be organized out of the starting line, but I googled it and they just offer help getting maybe a GED or some college prep courses, so that's not right for her. I just thought it might be since she would be unmotivated at grandma's house and it wouldn't work at yours. Then I thought about the peace corps because they say it's fulfilling. But I think Tallulah's right, you're going to have to hold her through this, somehow. It's not enabling it's scaffolding. It's enabling if you don't have an endgame and yours is helping her get through college and to grow into independence. Sorry I can't be more helpful.

The executive function may not catch up without therapeutic work of some kind. To be honest, there are plenty of bright autistic adults who don't reach the ability to hold jobs.

The fact that she thinks she's going back next fall without acknowledging that she's failed demonstrates that she's not thinking realistically. I don't see that sending her back to college at this point would work.


I'm probably being too frank here, but I feel it needs to be said. I think job 1 is for you and your DD to use professional help to understand what the disabilities entail. She *is* a higher-needs student. She is just very intelligent. The whole "high functioning" thing with autism is routinely misunderstood. It only refers to intelligence being unimpaired; it has absolutely no relevance to the severity of the disability. One can be both very intelligent and severely disabled by autism OR ADHD. Both is a very hard deal, but if she won't admit what's hard, she will never be able to take responsibility for her own performance.


Yes. For this I would want serious professional therapeutic help. And a social services agency may be able to fund someone to check on her when you are not able to, for instance.


I think that because she loves it there, it's the best carrot to get her to work on the issues she has. I'd make it a condition of her returning there at some point.

I hope you find a good solution.

DeeDee

Nik
I am weighing in here as someone who teaches at a university - the Dean you spoke with, what was the individual Dean of? I ask because it sounds like she is receiving no accommodations, which is inappropriate and I think illegal. Why is she not being allowed to turn in the freshman essay? We have a dean who handles students with documented disabilities and they get all sorts of help and accommodation.

Please ignore if this is who you have been working with - seems to me you could do DeeDee's suggestions without losing ground at the university. My read and I apologize if it isn't the case, is that they want her to take the year off rather than work it out now, and that's sort of surprising to me.

I can't off any other help, just my sympathy and support

DeHe

Well, this is the first I have heard of this program, on the one hand it seems great but the price YIKES! Also, the testimonies sound very much like my DD but the pics and descriptions seem to indicate a much higher-need population and that would really upset her to be put in an environment of higher needs students.

[/quote]

The program assesses students and places them at the level of individual support that they need, which can bring the price down if they really are not requiring daily intensive support. I went to an informational session for CIP Brevard, and several of the students in the program spoke at the session. The Asperger's students in the program who spoke were not people that would necessarily stand out if you passed them on campus, and all seemed to be gifted or highly gifted, but with executive function challenges, anxiety, and problems dealing with professors, navigating romantic relationships, and scheduling, regulating, and pacing study and rest. All had previously been admitted to excellent schools and then "crashed and burned" for various reasons related to their disabilities and level of coping skills. From what you indicate, your daughter may not be "higher need" in the sense of needing reminders to shower or do her laundry, but she certainly is "higher need" in the areas of being able to show up to class, complete and turn in assignments, and advocate for herself, which are pretty basic for success in college.

We actually looked into the Peace Corps before we found this college and they want people who already have degrees and skills…


I agree, therapy is a must for her future success, whether she gets to go back next fall or not. Although I do have faith that her EFs will catch up as I have already seen marked improvement – she has only missed 4 days of classes and those due to illness, she has kept up with all of the very rigorous reading assignments and shown mastery through orals with her tutors, she recognized a need for help in Greek and arranged for a private tutor which she has followed through with successfully (if only she would do this for writing too!!!).


It’s not 100% certain that she has failed yet, there is a slight chance she will have a “moment of writing flow” like she did on the last day of last semester and manage to turn the freshman essay/s in late and in that case, a chance they will accept an appeal and allow her to return. I think she is banking on that happening (and she has past experience to reinforce the idea that it is a realistic possibility). She is not thinking prudently, but she does precedent to argue that her thinking isn’t necessarily entirely “unrealistic”.

Perhaps this sort of leniency is what they are offering for accommodation…


This is the Assistant Dean of the whole college and she is the ADA contact. I didn’t know what accommodations to ask for, because the diagnosis was so new and we really didn’t/don’t know what the root cause of the problem was/is. I shared the eval and the “university class anxiety fiasco” with her last summer, but the program at this college is so well structured and supportive, having so few of the traps that usually need accommodating, we were just kind of hoping that the issues would work themselves out. I think all the help my DD needs is available at the college if she could overcome the anxiety and denial enough to ask for and accept it. It isn’t clear whether she will still be allowed to turn in the freshman essay, it was due over a month ago and I am not sure they would have time to review it at this point.


I am sort of torn between a very small part of me understanding the thinking that failure now might be what she needs to wake her up, and the rest of me knowing that a whole year of separation from this program now could be far too damaging for her to overcome.



Thanks for clarifying. Not only would my DD not stand out on the street, I would worry about suspicions of fraud if we were to apply for disability benefits. Really at this point she just needs help with completing and turning in writing assignments and advocating for herself/understanding what exactly it is she needs to ask for in order to be successful. I guess I could see what they would charge for help with just that, in the event that returning to college becomes no longer an option. Given that she would have to pay travel, room and board in another state in addition to tuition in order to take part in this program, even though it would be much better than just giving up on her, it would make funding for college no longer an option, and that might impact her desire to be helped.

I wonder if it wouldn’t be more cost effective and beneficial if I could hire a personal assistant/accountability coach type person at or near the college who would work with her on a weekly basis to make sure the writing is getting done and also accompany her to counseling/therapy. She might go along with that if it was made a condition of her return this fall.

While I was reading your reponse, I was thinking she needs a buddy!!! Personal assistant same thing. I would encourage you to do that but also to decide with your dd if she wants to go back and if you both want to go that route to schedule a meeting regarding her issues and how the freshman essay thing is part of that and ideally have the essay to turn in at that point. Grades can always be changed, there is a procedure for that when its a question of turning in work and if this is a disability issue then it should be accepted even at this point. I agree with your dd that there is precedent but using precedent as a means of avoiding responsibility without the evidence of what she is doing to rectify for the future might not be acceptable. I would encourage you use this to get her to understand her role in all this, and her responsibilities, and that the school needs to know she isn't just blowing it off because she doesn't care, but absent conversations with her, and a plan for the future, they have no way of knowing. She might not think she is failing but it looks that way from the outside unless she speaks up and if she can't speak up because of the anxiety in the moment she must acknowledge away from that setting that this needs to be in her accommodation because it's likely to happen again. Preemptive accommodations I guess.

Again, only speaking from the prof side of things, not the 2e side of things, there should be a way out/forward for her which does not involve having to be all sorted out before she comes back.

DeHe

Well, just as we feared, DD will not get to return to the college this fall, she did not turn in any written work and she stopped talking in her seminar (about the time her ADD meds stopped working). Interestingly, she did well on her oral which is a lengthy one on one discussion of her paper (that she did not write) with her teachers.

She will have to apply for re-admission and show what she has done to address the issues that held her back (anxiety and writing difficulties). Then she will need to repeat the spring semester if she is to go back. We had a long talk where I tried to convince her that she would be happier and more successful in a science/engineering program where she would play to her strengths and writing would not be such a huge factor, but she wants nothing else but to go back to this college and as soon as possible. So we have until August to show that the issues have been sorted out.

Question: since she did the heretofore unheard of and had a successful oral without even turning in a paper, I do believe that she would thrive if she could have accommodations that would allow her to give most or all of her written assignments to her teachers orally. Does that sound like an outrageous thing to ask? If the school could accommodate that, we could spend the summer working on anxiety and Executive functions with CBT and she could take a public speaking class at the local Community college.

Is this unrealistic?

If she's truly capable of producing the assignment orally, dictation software might be a good option. But the skills needed to succeed in a one-on-one discussion (where the other person provides a fair amount of organizational scaffolding) are not at all the same as the skills needed to produce a long written work (where you have to do all the organizing yourself, and organizational flaws can't be disguised by the organic flow of discussion). You have to have your whole topic in your head for both, but the purpose of a writing assignment is not just to demonstrate that you have the whole topic in your head.

I'm not saying it's an unrealistic thing to ask; just that it may fail to both accommodate your DD's weaknesses and satisfy the teachers that she's demonstrated the equivalent skills.

Has she tried the intermediate thing of writing her papers *by* first talking into a dictation machine, and then playing back (repeatedly, in sections) what she said as part of the process of turning it into written work? Different level, but this helped my DS when he was struggling with producing written explanations in maths - that doesn't have the same organisation issues, but still, it might be worth trying in case it might break the block, as it were.

We have the Dragon II software, I think we just need an extremely patient coach to help her get it working...She tried a few times and got very frustrated because it just wouldn't understand her and she is not speech impaired at all.

The purpose and structure of the essays at this college is quite unique in that they are intended purely for the benefit of the student and they involve demonstrating critical thinking by asking and exploring questions about the text, not answering them or bringing together research etc so maybe it would be okay? I am open to any suggestions on how to accommodate her weakness; ultimately that’s what we need to do.


I forgot about that but I did buy her a small portable recorder before she left for college so she could capture her thoughts on the fly before forgetting them and then write them down; she had said that was helpful.

I am guessing that when the meds quit working, everything else seemed to be too much effort and she fell back on the old strategy of just hoping she would wake up with the whole essay in her head and be able to write it out in one sitting before the deadline. That strategy has let her down but the few times it worked may have her thinking that's how it should be. Just my guess. She doesn’t seem convinced by the connection between her stopping the meds and it all sliding downhill even though that is when she quit talking in class and stopped producing written work on time. She argues that she was able to produce two essays at the 11th hour of fall semester without meds and then when she tried the meds again after a long break she was still not able to produce written work. I am not a med pusher, in fact I was against it at first but I certainly saw a big difference during the 3 months that they were working. God I hope I can get her in to see a good therapist soon she is on several waiting lists 7 months long. 