If *you* have Aspergers

[Jyniffrec]

I strongly suspect that I have Asperger's syndrome and my husband insists that I do (I am looking to find someone who can help me figure this out here locally).  I have struggled my entire time as a parent to pull it together to be a great mother and meet the typical expectations people have of parents in our culture.  I have made home schooling my obsession but have 2, likely 3, children with dyslexia.  I am not dyslexic (my dh is).  There are other diagnosed and undiagnosed problems with our children.  I dont have any of those either.  I have a hard time being sympathetic sometimes and my rigidity can really get in the way of being able to think creatively enough to help them.  I find myself getting depressed and angry.  

 

Our children also have rare diseases that lands them in the hospital in often life-threatening situations.  It took me years of awkwardly trying to navigate the system with the vague feeling I was doing something wrong before I began to trust the people who were trying to help our kids and I came out of my fog.  Now ds12 may have another rare problem that is life-threatening (it has killed family members) and I told dh I just can't bear the burden of another illness like that (my well ran dry a couple of years ago when I nearly died because I pushed myself so hard).  He needs to run the show on this one since it is his family. That is a nice idea and all, except that he is dyslexic and can't fill out the paperwork. :(

 

I also suspect ASD in my son and possibly one of my other children.  

 

My realization kind of explains a lifetime of bewilderment at my inability to get dinner on the table for my family because of of one obsession or another or why I don't understand what people are saying and why people have always said I am different or intense (these are examples, there is plenty more, lol).  What it doesn't do is help me to understand how to manage home  schooling these kids who desperately need my help.  We can't afford to send them to a special school or to get them tutors right now.  And I'm not a complete failure on this front - I just need to hear how other people manage life home schooling when they are the ones with ASD and they are overwhelmed with responsibilities.  I would really like to hear other people's stories. 

 

 

(And, by the way, I have improved lots by going gluten-free/low-gluten and setting my food making schedule strictly between 8am-10am.  Otherwise we bring dinner in or dh deals with it.)

 

Thanks for reading if you made it this far. :)

[dbmamaz]

My son has been diagnosed with various combinations of aspergers, adhd, bipolar, tourettes, and a processing disorder . . . idk, i might be missing something.  I eventually realized I also show some signs of bipolar and adhd and aspergers.  

 

Then my life . . yeah . . . first husband (father of my first 2 kids) i had to kick out of the house with a protective order because he'd become violent (turns out he had a seizure disorder).  during that I got laid off from a job, and then a year later, from another job.  I got a job in a different town, wrecked my car on the commute, moved, met another guy, got pregnant and remarried, quit my job and had a new baby, had to go back to work when canadian hubby's green card was delayed, then my middle child started getting dx's and dh decided being married to me was too hard because i didnt have normal kids . . . after 6 mo of fighting and therapy, he moved out .. . and moved back in about 9 mo later. 

 

Meanwhile, the middle child finally catches up to the bipolar dx - he's been violent, suicidal, and having panic attacks - he's 9 - and finally gets medicated, eventually on anti-psychotics, and gets moved from the gifted program to a stand-alone special ed room for emotionally disturbed kids, and then to a middle school program for autism.

 

So, my daughter hates me at this point and is getting meaner and meaner.  I have to put the little one in daycare during the whole separation and it killed me, and I hate my job, so after a bit, hubby says I can stay home - but only because I stopped talking about homeschool my middle child.  Then my daughter is totally losing it - runs away from school and walks 10 miles before she'll pick up the phone, and the cop who responded says "she says theres nothing wrong at home, at school, or with her boyfriend.  You might want to get her checked for bipolar".  I take her to a therapist who believes my daughters lies and blames me for all her problems so the relationship between my daughter and i gets worse - but I work with her school to get her to finish up mostly in community college, and i spend a year driving her between three schools.  Meanwhile both boys are crying about school amost daily and hubby finally says I can try homeschooling, but Id' better keep along the same lines the school is doing because he thinks i'm going to lose my mind and have to put them back in school.

 

Sometime during this general timeframe, my daughter comes swinging at me, she tries to move in with my mom, who then changes her mind and says no at the last minute, and then my daughter is hospitalized for being suicidal.  I do start homeschooling, but she get very angry any time she wanders downstairs (she almost never comes out of her room) and I'm busy . . . she's jealous that I'm paying attention to them?  If I can, i sit with her during lunch, but its never enough and she's mroe and more angry all the time, and moves accross the country the day she turns 18 to stay with friends.  

 

She's back 7 mo later, nicer for a while, but then gets sicker - she's tried a few meds that dont help, but the last one she ends up in a fibromyalgia flare, so she's now in constant pain and exhuastion and somehow thats all my fault too.  She gets a job, but has to quit because the hours are too much when she returns to school, goes on a road trip with some friends that goes badly, and then takes a half a bottle of pills and i have to call an ambulance . . . once she's sober she wont talk to me at all, and she's let out with nothing but a promise to go to therapy, which she wont do . .. oh, and some time that year, I hurt my knee and can barely walk . . . finally (jan 2013) she DOES move in with my mom, and the next month I have knee surgery which takes MONTHS to recover from ...  

 

I've been totally overwhelmed.  The house is a mess. I do cook, i love cooking, and we have a ton of allergies too.  Oh, and my youngest is the super-stubborn one with probably some dyslexia?  

 

I think I wrote more than you did.  but . . . i work hard on forgiving myself for my faults, accepting that there's only so much I can do before I get overwhelmed, accpeting that maybe I only feel like cleaning anything once a month, oh well.  I do try to make the kids help, and dh pitches in a lot, but he's super-grumpy, hates his job, and never bonded emotionally with my kids.  

 

Its a hard life.  Having my daughter gone made it a lot easier and i feel like I'm finally coming out of the worst of it.  I also take a lot of supplements?  But you have to focus on taking care of yourself without being judgemental about yourself, and doing what really HAS to be done.  Be glad of what you HAVE accomplished when there si so much on your plate and you are handicapped by your issues.  

 

I think i'm ok at being sympathetic sometimes?  Idk, my daughter thought i was a terrible mom but my boys think I'm fine.  I dont stress about academics, but try to cover math/science/english/social studies in some way each day.  My 10 yo thats playing dragonbox 12+ / reading some horrible science and telling what he read / working on a story or doing some workbook with me / stack the states app.  he's also doing a programming class and reading harry potter.  Thats it at the moment - not rigorous, but making a little progress and its very easy to implement.  

 

I eat a lot of  jelly beans.  

[IsabelC]

I am high functioning ASD, gifted, mild depression and anxiety (except for when I had post natal psychosis). I have one kid with Aspergers and hyperactivity, one gifted Aspergers and one neurotypical with generalized anxiety and a specific learning disability that we can't seem to get a dx for. We don't have any serious or life threatening medical issues, but I still find things pretty hard.

 

I'm not sure from your post whether you are looking mostly for suggestions or more for sympathy and understanding.

 

Do you have people other than your husband who can support and help your family? 

One way I cope is to consciously practice letting others take responsibilities when that's appropriate. It's OK to ask your husband to handle your child's health issue. You don't have to jump in and rescue him from the paperwork. If he can't read and write easily enough to deal with it, he can get help from whoever would help in families where there isn't anyone who can fill in forms (the hospital or specialist will be able to connect him the appropriate person). You might even be able to get a family support worker or equivalent whose job it is to help you navigate the system. 

[MomatHWTK]

I get treatment for myself.  I see the same group of professionals as my PDD-NOS?ASD child.  It helps that they know his history so I don't have to go over all that information.  Having a third party to look at my life and point out little things or big that I can do to lower the stress levels has been very helpful.  I have also learned that if the medcine and dosage isn't right, things don't go well. 

[Incognito]

FWIW, getting an evaluation for yourself might be really insightful.  It might not be Aspergers you are looking at.  Sure it could be, but it also could be OCD and anxiety, or giftedness combined with something else.

[Jyniffrec]

My son has been diagnosed with various combinations of aspergers, adhd, bipolar, tourettes, and a processing disorder . . . idk, i might be missing something. I eventually realized I also show some signs of bipolar and adhd and aspergers.

 

Then my life . . yeah . . . first husband (father of my first 2 kids) i had to kick out of the house with a protective order because he'd become violent (turns out he had a seizure disorder). during that I got laid off from a job, and then a year later, from another job. I got a job in a different town, wrecked my car on the commute, moved, met another guy, got pregnant and remarried, quit my job and had a new baby, had to go back to work when canadian hubby's green card was delayed, then my middle child started getting dx's and dh decided being married to me was too hard because i didnt have normal kids . . . after 6 mo of fighting and therapy, he moved out .. . and moved back in about 9 mo later.

 

Meanwhile, the middle child finally catches up to the bipolar dx - he's been violent, suicidal, and having panic attacks - he's 9 - and finally gets medicated, eventually on anti-psychotics, and gets moved from the gifted program to a stand-alone special ed room for emotionally disturbed kids, and then to a middle school program for autism.

 

So, my daughter hates me at this point and is getting meaner and meaner. I have to put the little one in daycare during the whole separation and it killed me, and I hate my job, so after a bit, hubby says I can stay home - but only because I stopped talking about homeschool my middle child. Then my daughter is totally losing it - runs away from school and walks 10 miles before she'll pick up the phone, and the cop who responded says "she says theres nothing wrong at home, at school, or with her boyfriend. You might want to get her checked for bipolar". I take her to a therapist who believes my daughters lies and blames me for all her problems so the relationship between my daughter and i gets worse - but I work with her school to get her to finish up mostly in community college, and i spend a year driving her between three schools. Meanwhile both boys are crying about school amost daily and hubby finally says I can try homeschooling, but Id' better keep along the same lines the school is doing because he thinks i'm going to lose my mind and have to put them back in school.

 

Sometime during this general timeframe, my daughter comes swinging at me, she tries to move in with my mom, who then changes her mind and says no at the last minute, and then my daughter is hospitalized for being suicidal. I do start homeschooling, but she get very angry any time she wanders downstairs (she almost never comes out of her room) and I'm busy . . . she's jealous that I'm paying attention to them? If I can, i sit with her during lunch, but its never enough and she's mroe and more angry all the time, and moves accross the country the day she turns 18 to stay with friends.

 

She's back 7 mo later, nicer for a while, but then gets sicker - she's tried a few meds that dont help, but the last one she ends up in a fibromyalgia flare, so she's now in constant pain and exhuastion and somehow thats all my fault too. She gets a job, but has to quit because the hours are too much when she returns to school, goes on a road trip with some friends that goes badly, and then takes a half a bottle of pills and i have to call an ambulance . . . once she's sober she wont talk to me at all, and she's let out with nothing but a promise to go to therapy, which she wont do . .. oh, and some time that year, I hurt my knee and can barely walk . . . finally (jan 2013) she DOES move in with my mom, and the next month I have knee surgery which takes MONTHS to recover from ...

 

I've been totally overwhelmed. The house is a mess. I do cook, i love cooking, and we have a ton of allergies too. Oh, and my youngest is the super-stubborn one with probably some dyslexia?

 

I think I wrote more than you did. but . . . i work hard on forgiving myself for my faults, accepting that there's only so much I can do before I get overwhelmed, accpeting that maybe I only feel like cleaning anything once a month, oh well. I do try to make the kids help, and dh pitches in a lot, but he's super-grumpy, hates his job, and never bonded emotionally with my kids.

 

Its a hard life. Having my daughter gone made it a lot easier and i feel like I'm finally coming out of the worst of it. I also take a lot of supplements? But you have to focus on taking care of yourself without being judgemental about yourself, and doing what really HAS to be done. Be glad of what you HAVE accomplished when there si so much on your plate and you are handicapped by your issues.

 

I think i'm ok at being sympathetic sometimes? Idk, my daughter thought i was a terrible mom but my boys think I'm fine. I dont stress about academics, but try to cover math/science/english/social studies in some way each day. My 10 yo thats playing dragonbox 12+ / reading some horrible science and telling what he read / working on a story or doing some workbook with me / stack the states app. he's also doing a programming class and reading harry potter. Thats it at the moment - not rigorous, but making a little progress and its very easy to implement.

 

I eat a lot of jelly beans.

That is a heck of a lot to deal with, even for me.

 

What your 10yo is doing sounds a lot like what I used to do with my kids back before dd10 got sick. Now I just feel like I need to get her to the starting line, which is a lot of work, and to convince ds12 he needs to go back to the starting line in some areas to get some things straightened out. When he lashes out I make him run laps, lol. By the time he is done he is too tired to complain much. I am too tired (disinterested in the most benign way?) to deal with his junk. Sometimes I just feel like I am holding my breath through school with him so that I can exhale when we are done. He has made it clear that he doesn't want my help, but then he comes to me and asks for help. That just gets me riled up, especially when he just.doesn't.get.it. At that point I tell him to wait until dh gets home for lunch to go over it with him. I learned a long time ago to draw the line in the sand and say something along the lines of, "We are stopping here because if we don't I am going to lose my temper and neither one of us wants that." He got the message eventually. I think he is a lot like me, which is why we clash so much.

 

When dd10 got sick (at the age of 3), I was pregnant with dd6. I was very sick during that pregnancy because of dd6's genetic problems. I lost all interest in that pregnancy and just focused on dd10 and how to get her better. Her very complicated, life-threatening illnesses became my obsession. Now I have lost interest unless there is something new we can do. I don't really read the latest research anymore and just make sure she has her medicine and that she follows the diet we have figured out for her in the last few months. My dd6's illness was overwhelming for a long time, too, and became part of my obsession once she was born, but I didn't know how to put on the brakes *ever* and ended up in the hospital for 5 days with a gangrenous gallbladder. That was when I hit bottom and had a very bad case of caretaker's fatigue.

 

Through all of this I was feeling really, really lost. I had nothing to ground any of this on. Fortunately I had my best friend there who could kind of guide me through the problems I had with medical staff (many of whom have become friends in the end) because I just didn't understand how to communicate with them and I didn't trust myself to understand what was going on.

 

So now here I am closing in on 40 and just feeling absolutely finished. Yet I can't be. I still have all the things going on that I always did and these kids who depend on me to raise them and educate them whether I am interested or not. Creating a routine has helped a lot in some areas, as I mentioned in my first post, but I still struggle with staying on task when I don't see much progress. We also moved away from our support system and I feel afloat without it. I spend a lot of time doing nothing because I'm not sure what to do next.

 

I have decided to stop comparing myself to other people because I have realized that I am not like the other home schoolers around me. I can't keep a perfect house because I just don't have an interest in it sometimes, kind of like what you said in your post. At the same time it drives me crazy that *someone* isn't dealing with it (who is this mythical person if not me?). So I just wish I knew what is reasonable. I now know this:

 

1. Getting food on the table is the most important thing of the day.

2. Getting the bed made every day has to happen or I will get depressed and angry.

3. School in its most basic form: math and L.A. such as it is (although more almost always gets done), must always be done on our scheduled days in the scheduled times

 

Oh, and dh depends on me to set the tone because I have always been such a driven person in one way or another and he is not.

 

Do you remember that post about existential depression? I think that the part about there not being a structure out there that is absolute is part of my problem, too. Creating even the bare bones that I have above has been a mountainous struggle that has taken me 14.5 years to figure out. Yet my home schooling neighbor acts as if these things and much, much more is no big deal. Life just seems to come more easily to her, even with some pretty major issues that she is dealing with, too. I'm not jealous, lol, just amazed that she can pull it off and still wear her clothes on the right way (I can't). But that just isn't me.

 

Jelly Bellies do sound good...

[Jyniffrec]

I am high functioning ASD, gifted, mild depression and anxiety (except for when I had post natal psychosis). I have one kid with Aspergers and hyperactivity, one gifted Aspergers and one neurotypical with generalized anxiety and a specific learning disability that we can't seem to get a dx for. We don't have any serious or life threatening medical issues, but I still find things pretty hard.

 

I'm not sure from your post whether you are looking mostly for suggestions or more for sympathy and understanding.

 

Do you have people other than your husband who can support and help your family?

One way I cope is to consciously practice letting others take responsibilities when that's appropriate. It's OK to ask your husband to handle your child's health issue. You don't have to jump in and rescue him from the paperwork. If he can't read and write easily enough to deal with it, he can get help from whoever would help in families where there isn't anyone who can fill in forms (the hospital or specialist will be able to connect him the appropriate person). You might even be able to get a family support worker or equivalent whose job it is to help you navigate the system.

 

I just want to hear from other people about how they cope with day to day demands when things seem uninteresting or downright depressing to deal with. I don't care so much about sympathy, lol, I just need to know how to keep the ball rolling in the right direction.

 

We had an amazing support system where we used to live. We moved because dh's career needed it. I never expected things to be quite as hard as they have been. We moved from a relatively small, but thriving, place to a big city area. It is extremely hard to get involved in any groups here (I normally wouldn't care and shy away from that stuff, but my kids need it desperately). I have said since we moved here that I have friends and they live in C---. I don't need friends here, but I guess that isn't really true, except that I really am not interested in replacing those people. I never was able to really make friends anywhere else but my daughters' illnesses drew people out there and a lot of people I grew up with lived there. I still keep in contact with them and we visit them occasionally. But here? So far that isn't working out so well. We finally got into a co-op for next fall and have a social this weekend that we are all really nervous about. I hope I can find one or two people that I can connect with for the sake of my kids.

 

You are right about the social worker. We have had them in the past (hospital social workers), but I have always been nervous about them and didn't know how to act or what to request. It was liking having a stranger who wanted to step into the most private parts of our lives and act like it was perfectly normal. I guess that is part of why doctors and nurses used to make me so nervous, too.

[Jyniffrec]

I get treatment for myself. I see the same group of professionals as my PDD-NOS?ASD child. It helps that they know his history so I don't have to go over all that information. Having a third party to look at my life and point out little things or big that I can do to lower the stress levels has been very helpful. I have also learned that if the medcine and dosage isn't right, things don't go well.

I am getting to the point where I can see this. This, again, has to do with not wanting strangers in my personal life and talking about such important things. Maybe if I had my son evaluated first I could ease into it in the background.

[Jyniffrec]

FWIW, getting an evaluation for yourself might be really insightful. It might not be Aspergers you are looking at. Sure it could be, but it also could be OCD and anxiety, or giftedness combined with something else.

You definitely could be right. The not knowing drives me batty sometimes. I will go back and look at all my quirks and then spiral in my head a bit because it all lines up. But then, hey, what do I know? If there is anything going on then my definition of things could be fundamentally different from what NT people would think. Maybe. Geez, it drives me crazy, lol. Truthfully, what is limiting me from pursuing it is all the medical stuff we need to deal with on our children's end and the money it takes to do all that. I can see that it is important, though, and that other things may line up better as a result.

[dbmamaz]

I have been to a few therapists (marital and individual) over the past decade-and-a-half.  The last one, who was my favorite, told me that if I was satisfied with my level of functioning, there was no reason to go for an evaluation.  But when things get bad, I always consider it - because i'd love a pill to help!!  At times therapy has been helpful as a pressure-outlet, but not much more for me.  

 

It is really hard moving to a new city.  I've never really had a support system, but i can imagine how hard that would be to lose.  Hopefully you'll meet some new people soon.  I've also recently been wondering if my general mistrust of doctors is doing more harm than good - but doctors tend to respond badly when you come in having done all your research and having a pretty good idea of what is going on.  I keep having doctors telling me that I cant be experiencing what i'm experiencing, or offering anti-depressants for fatigue.  

 

I also need a schedule - its not a precise one, but the day has a definite flow, and there are no electronic entertainments (except reading facebook / fan fics) during 'school' hours.  

[Jyniffrec]

I have been to a few therapists (marital and individual) over the past decade-and-a-half. The last one, who was my favorite, told me that if I was satisfied with my level of functioning, there was no reason to go for an evaluation. But when things get bad, I always consider it - because i'd love a pill to help!! At times therapy has been helpful as a pressure-outlet, but not much more for me.

 

It is really hard moving to a new city. I've never really had a support system, but i can imagine how hard that would be to lose. Hopefully you'll meet some new people soon. I've also recently been wondering if my general mistrust of doctors is doing more harm than good - but doctors tend to respond badly when you come in having done all your research and having a pretty good idea of what is going on. I keep having doctors telling me that I cant be experiencing what i'm experiencing, or offering anti-depressants for fatigue.

I've learned with doctors to go in educated but to weave in what I know with what they are saying. I see it as supporting information. That way I'm not usually blind sided anymore. I'll never forget the first time I heard my kids' disease names (Primary Sclerosing Cholangitis and Medium Chain Acyl CoA Dehydrogenase Deficiency). I couldn't remember them and had to write them down. I try not to get myself in that position anymore.

 

As far as therapists go, I can usually punch through my personal problems with the help of dh and some time to think through them. I guess that is why a diagnosis would be helpful for me. It would give me a baseline for my own analysis as to why things seem to be the way they are with me.

[raptor_dad]

I've learned with doctors to go in educated but to weave in what I know with what they are saying. I see it as supporting information. That way I'm not usually blind sided anymore. I'll never forget the first time I heard my kids' disease names (Primary Sclerosing Cholangitis and Medium Chain Acyl CoA Dehydrogenase Deficiency). I couldn't remember them and had to write them down. I try not to get myself in that position anymore.

 

As far as therapists go, I can usually punch through my personal problems with the help of dh and some time to think through them. I guess that is why a diagnosis would be helpful for me. It would give me a baseline for my own analysis as to why things seem to be the way they are with me.

 

Maybe I am on the spectrum... maybe I "merely" have a social anxiety disorder... either way, please forgive me for any lack of tact ;)

 

My wife is a pediatric sub-specialist. Docs are very busy and some time fail at the social aspects of their jobs. This is completely unacceptable and often tragic. Noone wants this to happen. Push back... demand the answers you need. If you aren't getting it from your docs... try to find an internal advocate. Any referral hospital should have patient advocates on staff. Usually these are either social workers or pastoral care workers depending on what part of the country you are in. Their entire job is to help chronic patients navigate the system. With your diagnoses you should also be in contact with the genetic counselling folks. Even if they aren't helpful, they should be able to refer you to other resources inside the health care system.

 

These patient advocates aren't as well paid but have just as important and stressful jobs as the docs. They should help you navigate the system... and should be able to help you with the psycho-social issues of having a chronically ill kid and to a limited extent act as a clearing house for other family medical issues. I know all Children's Hospital have these people on staff... hopefully your local hospital does as well.

 

Good luck.

[Jyniffrec]

Maybe I am on the spectrum... maybe I "merely" have a social anxiety disorder... either way, please forgive me for any lack of tact ;)

 

My wife is a pediatric sub-specialist. Docs are very busy and some time fail at the social aspects of their jobs. This is completely unacceptable and often tragic. Noone wants this to happen. Push back... demand the answers you need. If you aren't getting it from your docs... try to find an internal advocate. Any referral hospital should have patient advocates on staff. Usually these are either social workers or pastoral care workers depending on what part of the country you are in. Their entire job is to help chronic patients navigate the system. With your diagnoses you should also be in contact with the genetic counselling folks. Even if they aren't helpful, they should be able to refer you to other resources inside the health care system.

 

These patient advocates aren't as well paid but have just as important and stressful jobs as the docs. They should help you navigate the system... and should be able to help you with the psycho-social issues of having a chronically ill kid and to a limited extent act as a clearing house for other family medical issues. I know all Children's Hospital have these people on staff... hopefully your local hospital does as well.

 

Good luck.

Thank you for this. I have been busy with other things but have been mulling over your post for awhile. Dd10 has an appointment at the local children's hospital (a major one) on Friday and ds12 has one on Monday. I'm going to try to arrange to meet with someone then and take that step out. It has taken a lot of years for us to realize that help really would be useful, but I think we are finally there.