In need of sympathy and advice...again

[wingedradical]

Brief history - DFD is 16. She came to us a year and a half ago. This is her second year of homeschool as a junior.

 

DFD has many problems - some of which we aren't sure re: every diagnosis. She has PCOS. She has Hashimoto's Thyroiditis. She has been diagnosed as bipolar and put on the normal drugs - lithium, Seriquel and Limotragine. The Lithium caused her thyroid to plunge to dangerously low levels, so low the doctor didn't believe the first two tests  and then took her off the lithium without any taper. DFD did not have any reaction to the withdrawal, though. Her thyroid is still very low (they are afraid to raise it to quickly). When I say low - normal number should be 4, at the most, 5. Hers was 346 - the high number means her function is low. It is now up to the low 200s. 

 

DFD also probably suffers from attachment issues although I see improvement there. She also has some Asperger's symptoms although her doctors think this is because both parents and her sister (not with me) all have aspergers. And I think they are right - she just has some characteristics without the actual disease. 

 

Anyway, what with meds, little or no thyroid function, ongoing stresses with her parents from afar, etc., her ability to concentrate is very limited. Also, she is lacking in executive function and maybe processing speed since much of what she do is very slow motion.

 

But she's smart and has always wanted to go to college. She is ready for calculus, is doing chemistry this year, along with Spanish IV, history, literature/writing, child development  and informal logic. She excels at math and science, struggles more with literature and history because she has to wade through things, arrange them and write about their implications and this isn't easy for her. She is improving, but very slowly and unevenly.

 

However, now we get the the crux of the matter....it is wearing me out, and her as well. So much that I was looking at the chances of her getting into college if I unschooled her for the next year and a half (good, btw, especially if she starts at community college).

 

Here's the problem: There is so much she needs to learn about things like executive function, being around people, and other things that she is behind in. I feel like there aren't enough hours in the day. I am a big believer if children - even teens - having free time to pursue interests and to just "be." But if I try to follow the high school curriculum SHE has laid out (not me -- SHE wants it all because she formerly went to a very academically oriented high school and they told her she had to have this, that and the other to get into college). But the fact is, she can't get a scholarship because the grades aren't there. Well, let me say that again - she IS making an A in every subject, except "maybe" Composition and LIt and even there, it's a B. It could still be an A except that there is no way we will get everything covered in the year at this rate.

 

This is not a kid who won't concentrate on purpose. She cries about it sometimes. All through grade and middle school, she was in Gifted classes. Then, her last year of middle school, the teacher wanted her out because she was struggling with what we know was depression and executive function deficits - but the teacher told her she would never get through high school and go to college because she wasn't really gifted - she was a savant. (This caused a big commotion - the teacher almost got fired over it, long story). Anyway, I don't agree with this, nor did the other teachers or the gifted teacher's superiors. Her math skills are not at all like a savant's. She just likes math because it was the only thing in her life that was predictable for years. 

 

Anyway, she has a scrapbook and one page has stars all over it and her photo and the caption, "I'm Going To Show That Teacher How Wrong She Is!" 

 

She did this herself but when she struggles so much, it is hard for her to feel like it will come true.

 

I think (and my husband) that if I had all the time and freedom in the world, I would slow down with the actual school work, do more things that she is interested in and more things where I can help her learn social, coping, concentration and executive function. I can do some of that in school work but not enough.

 

Advice? 

 

SHE is convinced she needs to do all these classes this year but it just isn't working. She reacts very badly to the suggestion of staying in school with me another semester or so --- she sees that as total failure while I see it as something that is probably necessary because she is a sick girl. I had to drop out of my 3rd year of nursing school because i had a non-cancerous tumor removed but then got peritonitis and missed too much to make up. Frustrating, yes, I graduated a semester late - but I still graduated. And so could she. But convincing her of that....she doesn't need to feel like a failure but it seems to me unless something changes in the amount we are able to master (I believe in mastery), that she isn't going to finish anyway and I'll have wasted all the time on English and the like and little on what she really needs.

 

What say you?

[MomatHWTK]

Not much help to offer, but the seeing things as all or nothing/perfect or fail are Asperger traits.  So it may be difficult for you to convince her otherwise- the need to do X a specific way is part of the condition. KWIM? 

[srs]

Just reading all that made me feel worn out, no wonder you are both feeling it. Is there any way to combine academics with social skills work, like in a class or group setting, or is her curriculum already planned out for the year?

 

Edit: sorry, just reread and saw that you mentioned this already, and can't get enough in. I understand that, we have a similar problem, albeit in a very different stage of learning.

[OneStepAtATime]

Is she seeing a psychologist, someone who really "gets" her and she is comfortable with?  It might help if she could talk out her frustrations with a neutral 3rd party.  It might also help if there were some reading material available written to her age level that discuss waiting as a positive, maybe a biography?

 

Both of my kids are dyslexic and remained undiagnosed for years.  My eldest may very well be 19 before she graduates high school.  However, now that we are homeschooling and I have been able to show her that the public school schedule is arbitrarily created by people that have never really studied the scientific research on how we, as human being learn, and is frequently tweaked by people with no training or background in brain development and learning processes, she has been more and more willing to go at the pace that works best for her instead of what "public school" states should be the time table.

 

I don't know if this will help, but you might try reading Homeschooling Your Struggling Learner by Kathy Kuhl, Smart but Scattered by Peg Dawson and Richard Guare and Building Resilience in Children and Teens (Giving Kids Roots and Wings) by Kenneth Ginsburg.  All three of those books really helped me and the information could be applied in so many different ways.

There must be other books out there that could give you some guidance on how to help a child that is extremely bright but has so many specialized issues.  Hopefully someone else has some suggestions... 

 

Big hugs to both of you and best wishes.  If I think of anything else, I will post.  Sorry I don't have anything more concrete to suggest.

[PeterPan]

That's what I was going to ask, if she's seeing a counselor or psychologist.  Might be a 3rd party or expert could help her sort this out, since it's pretty clear she wants to own it.  

 

Just out of curiosity, you got her thyroid antibodies tested and they indicate hashimoto's  It's possible to be low thyroid without antibodies.  That high number you were giving is probably her TSH.  With her thyroid that low, I'm surprised she feels well enough to study.  Low thyroid causes nasty brain fog.  Personally, I'd give her a whole year off.  It will take a while to get her thyroid levels right, and she may be feeling much worse than she realizes.  Her sensory may be off if she has sensory issues, so she may not be interpreting correctly what she feels with brain fog, etc.  (btdt)

[OneStepAtATime]

That's what I was going to ask, if she's seeing a counselor or psychologist.  Might be a 3rd party or expert could help her sort this out, since it's pretty clear she wants to own it.  

 

Just out of curiosity, you got her thyroid antibodies tested and they indicate hashimoto's  It's possible to be low thyroid without antibodies.  That high number you were giving is probably her TSH.  With her thyroid that low, I'm surprised she feels well enough to study.  Low thyroid causes nasty brain fog.  Personally, I'd give her a whole year off.  It will take a while to get her thyroid levels right, and she may be feeling much worse than she realizes.  Her sensory may be off if she has sensory issues, so she may not be interpreting correctly what she feels with brain fog, etc.  (btdt)

Being tired and not very focused, when I read the post I didn't key in on the thyroid issue.  That can be a huge problem that a lot of people really don't recognize.  My mother has Hashimoto's and I have Graves disease.  I can tell you with both issues if the levels are extremely off, trying to think and function is exceedingly difficult, cognitively, emotionally, etc.  And it can be really challenging to get things back under control...definitely find a way to make that a priority.  It might really help with her depression, her ability to think logically through her situation and her ability to function in general.  When my levels are off, my executive function abilities run right out the door...along with memory, emotional stability, resilience, etc.  I also have hypoglycemia, which just compounds the problem, but the thyroid problem could really be making her feel a lot worse than she realizes, just like OhElizabeth said.

[PeterPan]

Wow, it's eerie how much we're alike, OneStep!  :)  Yes, I have hypoglycemia too and post-partum went low thyroid.  It was not Hashimoto's (no antibodies), and after a couple years of meds and being dissatisfied with my health I took a different approach and went nutritional.  So yes I've had the brain fog plus sensory thing.  Since the girl is borderline aspie, it's probably a good assumption she has sensory problems.  Also, if they found she didn't have antibodies, she'd have more options on getting that thyroid stabilized.  Now mine is pretty good, assuming I'm a good girl and eat my salad and take my kelp and all that.

[OneStepAtATime]

Wow, it's eerie how much we're alike, OneStep!   :)  Yes, I have hypoglycemia too and post-partum went low thyroid.  It was not Hashimoto's (no antibodies), and after a couple years of meds and being dissatisfied with my health I took a different approach and went nutritional.  So yes I've had the brain fog plus sensory thing.  Since the girl is borderline aspie, it's probably a good assumption she has sensory problems.  Also, if they found she didn't have antibodies, she'd have more options on getting that thyroid stabilized.  Now mine is pretty good, assuming I'm a good girl and eat my salad and take my kelp and all that.

I have not tried kelp and salads and such as a regulatory approach to those issues...actually, I really, really need to focus more on my diet.  And I really wish we lived near each other, OhElizabeth!

 

Wingedradical, have you looked at diet influences?  I realize with so much going on, diet may not have been something you have had time to deal with.  I know I keep forgetting to focus on what I eat.  I try to be more mindful with the kids, but that doesn't always work out...especially since my husband is a huge Little Debbie fan.  He has the stuff all over, bless him....

[PeterPan]

I have not tried kelp and salads and such as a regulatory approach to those issues...actually, I really, really need to focus more on my diet.  And I really wish we lived near each other, OhElizabeth!

 

Wingedradical, have you looked at diet influences?  I realize with so much going on, diet may not have been something you have had time to deal with.  I know I keep forgetting to focus on what I eat.  I try to be more mindful with the kids, but that doesn't always work out...especially since my husband is a huge Little Debbie fan.  He has the stuff all over, bless him....

Oh mercy, on the Little Debbie, just don't buy it.   ;)  Sorry, that's b&w.   :lol:    I don't keep things in the house that are going to be around and cause me problems if I eat them.  I can walk away from ice cream, so that can be in the house.  I can't walk away from cookies (we're talking like GLUTTONOUS consumption here), so if dd makes them I usually have her freeze the rest and hide them from me.  I didn't yesterday, oops.   :)

 

Diet helps not only on a theoretical level but on a very real one.  A lot of these kids will turn out to be low tone.  If you're low tone, you can have mitochondrial disorders underlying it.  If you have mito issues, well they claim food won't help but they give you carnitine supplements and a couple other things.  So bear with my dreadful leaps of logic here, and the long and short is you research and you find there are certain foods that people consume that are high in some of the things that can benefit people with mito issues.  Then you look at your own diet and you go "oh my soul, I had never realized maybe that daily salad was actually doing some GOOD for my mitochondria!" and that it's not just your IMAGINATION that you feel better when you eat it...  

 

So that's your unsubstantiated rabbit trail for the day.  My nutritionist has all these claims about the pituitary, feeding glands with food, food as medicine, blah blah.  Do as you will.  I've just found that food is an essential part of me being well.  The kelp is easy to take (just buy in capsules).  I take 6 a day.  Work up slowly, research, decide for yourself what is safe.  If you're taking that on top of meds, obviously be careful.  (run tests, may need to adjust, could throw other things out of whack, etc.)  I'm not a doctor, so I'm just telling you what *I* do.  

 

For me it's pretty astonishing how different I feel if I eat a 3 cup salad every day.  It's one of those things that are sort of simple to change (just do it!) that can have a huge impact.  And yes I would totally recommend it for the teen.  Might not be fun, but put meat on it, whatever it takes.  It might actually make a difference.

[OneStepAtATime]

Oh mercy, on the Little Debbie, just don't buy it.   ;)  Sorry, that's b&w.   :lol:    I don't keep things in the house that are going to be around and cause me problems if I eat them.  I can walk away from ice cream, so that can be in the house.  I can't walk away from cookies (we're talking like GLUTTONOUS consumption here), so if dd makes them I usually have her freeze the rest and hide them from me.  I didn't yesterday, oops.   :)

 

Diet helps not only on a theoretical level but on a very real one.  A lot of these kids will turn out to be low tone.  If you're low tone, you can have mitochondrial disorders underlying it.  If you have mito issues, well they claim food won't help but they give you carnitine supplements and a couple other things.  So bear with my dreadful leaps of logic here, and the long and short is you research and you find there are certain foods that people consume that are high in some of the things that can benefit people with mito issues.  Then you look at your own diet and you go "oh my soul, I had never realized maybe that daily salad was actually doing some GOOD for my mitochondria!" and that it's not just your IMAGINATION that you feel better when you eat it...  

 

So that's your unsubstantiated rabbit trail for the day.  My nutritionist has all these claims about the pituitary, feeding glands with food, food as medicine, blah blah.  Do as you will.  I've just found that food is an essential part of me being well.  The kelp is easy to take (just buy in capsules).  I take 6 a day.  Work up slowly, research, decide for yourself what is safe.  If you're taking that on top of meds, obviously be careful.  (run tests, may need to adjust, could throw other things out of whack, etc.)  I'm not a doctor, so I'm just telling you what *I* do.  

 

For me it's pretty astonishing how different I feel if I eat a 3 cup salad every day.  It's one of those things that are sort of simple to change (just do it!) that can have a huge impact.  And yes I would totally recommend it for the teen.  Might not be fun, but put meat on it, whatever it takes.  It might actually make a difference.

Definitely looking at my diet this weekend and trying to come up with a better plan.  Thankfully, I don't actually have an attraction to most Little Debbie items, but my son does.  Daughter doesn't care for them either, but she really isn't big on veggies besides broccoli casserole, so I need to be finding more veggie items that we will all eat.  As for eliminating Little Debbie from the house, I think my husband would consider that grounds for divorce.  He's been having an affair with her for decades.  Before we were even dating (several decades ago when we were young and skinny) and he had a party at his house, I happened to see him open his pantry and it looked like a Little Debbie aisle at a grocery store.  Should have realized then how much he loved her...  :)

 

Thankfully, he also likes lean meats and veggies, but I had to hogtie him to get him to eat whole grain breads, drink low fat milk, etc.  Little Debbie was non-negotiable....

[prairiewindmomma]

My e key is failing on my keyboard, so pardon my typos....

 

Another hashi-hypo mom here. Just wanted to chime in that kept is NOT recommended if you are dealing with the autoimmune Hashimoto's type of thyroid issues. You can do some things nutritionally, but ultimatly it's an autoimmune problem.

 

Does she considr community colleg "college"? Perhaps you could find a middle ground there where she feels like she is getting what she needs, but you are taking a slower approach. If she dual enrolls and takes one community college class next semester, is that enough for her?

 

Here, dual enrolling is an option, and foster kids get free tuition.

[kbutton]

I deal with someone regularly who doesn't have Asperger's, but has some quirks from family environment and/or total lack of training, etc. I also have a son with Asperger's (9 y.o.). I think having a third party helping you both discuss and plan might be worth a try. I think it's hard for teenagers to take the long view of anything--I say that looking back to when I was a teenager, and most people thought I was mature and good at looking into the future. It's pretty scary from my current POV if they thought I was an example! Add in a situation where she has some very firm notions about what defines success, failure, smart, high-achieving, or even "normal," and it's going to take a lot of working together to come to agreement. If she has good self-awareness, I would try to gently capitalize on it. If she does not, you might be shouting into the hurricane. Is there a gentle way to pull the rug out from under her (regarding everyday, expected executive fx tasks) to help her see that she's not going to make it if she doesn't take the time to be ready both health-wise and personal skill-wise? I have folks in my extended family that have to have things proven to them in rather stunning (and excruciating) ways to really come to grips with things--even ordinary things. I love them, but I sure wouldn't want to have to live with the fallout of some of the weird, bad, short-sighted, or immature decisions they made while they spent early adulthood going through extended adolescence, debt (the ones I am thinking of have had or still have MAJOR issues with money), expensive educational decisions that didn't actually lead to greater employment opportunities, and sometimes being put in a bad situation by others and not knowing it until it's too late.

[Ottakee]

In addition to making sure you have the best endocrinologists and psychiatrist you can get for her (harder I know for foster kids) I would check with the social worker about college tuition programs, etc. Here in Michigan there is a TIP program which gives foster kids free college tuition for 4 years. It doesn't cover books, fees, and housing but it is a huge help, esp. if she could commute.