Why is there so much stigma around some things and not others?

[4KookieKids]

 As in, I don’t really think twice before dropping words like anxiety and sensory processing and dyslexia when I am discussing my children’s challenges with people, but it would be extremely rare for me to mention words like bipolar or autism to folks who weren’t in a need to know sort of position.  Is that wrong? Is that me projecting my own biases on to other? I’d like to think that I am protecting my children from other people‘s ignorance and judgment, but I wonder if I am contributing to the culture of stigma By not talking about these things.

In part, I think I’ve just been burned by trying to talk to friends, and having them tell me I’m overreacting or that this is just normal for children. But it’s just so much easier to talk about dyslexia, as it’s understood that it’s not the kids fault, not my fault, and it’s not a behavioral issue. Things like autism and bipolar, I often feel like people assume I have done something wrong, and my parenting skills are just in adequate.

[PeterPan]

Glen Close was part of a move to de-stigmatize mental health issues and create awareness. I think it's really different with children, because people don't expect significant issues like that in children. They tend to associate it with adults. On a person level, I think using mental health labels early on is a challenge, because the mental health field changes. I know people who were diagnosed one thing and then over time it morphed to another label and then another. In that sense, giving that information out is attaching something into someone else's permanent brain that probably isn't actionable for them and might change with time. Words we use have changed a LOT over the last 20-30 years, and words are POWERFUL.

I also think there's the significant issue of privacy. Your dc who is 8 or 9 will soon be 18 or 19 and a teen and valuing their privacy and space to grow and work out life. It's not really YOUR LABEL to give. It's their label and there comes a point where it's their choice to disclose. So you want to be careful there.

So I could posit the flipside. If it were YOUR label (as in you were the one diagnosed), would YOU want it disclosed in that setting? You might find that if it were your own issue, you'd be more worried about your privacy than cause advocacy. Advocacy comes later, with maturity, with acceptance, readiness, choice.

The safest thing is need to know basis. You give the amount of information necessary to keep the child safe in a given situation. I personally try not to give people information they aren't prepared to handle. Unless the person is a nurse, p-doc, whatever, they probably haven't got a CLUE what to do when you say "childhood bipolar," meaning you're just opening yourself up to their assumptions and stigmas and criticism. And if it's churches, well some churches are the LEAST safe place to share challenges, mercy.

I'm more free about saying autism, but my ds' support level is 2, meaning no one is confused. Level 3, and it's obvious to anyone. Level 2, yeah it might take 'em a few minutes but then they're in the oh my lands that's weird and what is that... When we thought my ds' support level was 1, we were much more slow to talk about it. You've probably read the excerpt from a popular author's book around here (ahem) that was pretty critical of support level 1. I think there can be that perception like it's an excuse. I don't know, because that's not our boat. What was our boat was being labeled level 1 and thinking we were failing by NEEDING to be able to give explanation and HAVING a hard time and people (the local ps IEP team, etc.) like level 1 should be a cake walk... So to me, level 1 has that privacy issue in spades because many people won't catch on immediately. But my level 2, at least for us, we're constantly having to problem solve. We seldom have situations where it's such a non-issue that it doesn't become obvious or get mentioned. And I use the term because I need doors to open and people to become flexible and I need it NOW. If I had to say "swallowed radioactive pills" I guess I would, lol.

You're right though that once you're in the camp you catch on that there are labels that are ok to talk about and those where people stay hush hush. In my exposure, the problem is the church. It's the anti-DSM, extreme anti-psychologist, anti-use-your-head, anti-EVERYTHING, seemingly movement that has their heads so far somewhere stupid that they can't see up. It causes people to need to stay quiet to survive, and it causes a lot of hurt.

I guess say what you want, but if it's not coming out to open doors I probably would be more slow. Maybe talk with the dc about what they want said and begin them on their own journey of self-advocacy. They have a part in recognizing how they want to be talked about. I haven't had that discussion with *my* ds, because he's 9 and clueless. But if the dc has a clue, you could, certainly. 

[Guest]

Both my boys know they are autistic and know they are different in certain ways and sometimes face challenges that other kids may not face, but they also have strengths that others may not have. We don't hide it and are quite comfortable speaking about it, both my husband and I. We want our kids to be comfortable with who they are and not feel like there is something wrong with them. I care more about their relationship with God than their relationship with people, and that is what I stress with them. We face challenges together as a family. For those that have an issue or whatever perceptions? We couldn't care less. They make no difference in our life. But you will find that there are many more people out there these days that are familiar with autism and are more accepting. For those that aren't, I see it as their issue, not ours.

[Pen]

Dyslexia had a lot of stigma until recently.

People would think someone with dyslexia would not be safe to drive or practice medicine. Or...  Then I think in part more openness and information has meant that fewer people think that dyslexia means seeing the world upside down and backwards. So more openness and information has helped lessen the stigma. 

Less stigma means there is then yet more openness and information.  

Probably if the only time people know about something like bipolar is when it is an extreme situation, maybe something newspaper worthy, then it tends to make it seem especially bad and dangerous increasing stigma and lack of information. 

[Crimson Wife]

It was eye-opening and disappointing to see the difference in treatment my SN child got when her physical disability became highly visible vs. when she only had the developmental disability. People are sympathetic to the hearing loss while too many act like the autism is me making excuses for poor parenting.

[PeterPan]

4 hours ago, HeighHo said:

I made new friends,

I think this is a really important part of the journey. 

[4KookieKids]

4 minutes ago, PeterPan said:

I think this is a really important part of the journey. 

Yes, my dh has told me repeatedly that the friends I was closest to while pursuing ds's ASD eval were awful and I needed new friends. But our kids were and remain really good friends... They definitely suggested that it was all in my imagination and that psychologists were of the devil and should never be trusted, anyway. It was a bit traumatic for me at the time (seems dramatic to say, but that's what it felt like, being told this by one of my best friends at a point when I felt like I was completely drowning under the weight of four young kids, with one an infant and at least two with extra needs). After that, I didn't really confide in very many people besides our professional team and my husband and two other good friends that I eventually opened up to.  I appreciate the two friends that I can actually talk with. They're not in the same boat at all, but they listen and brainstorm with me and are generally very supportive. 

[PeterPan]

Yup, that's the circles I was raised in, and I'm kind of half and half. At the church I go to now, they're sorta country bumpkin, not making any effort to be intelligent or learn, and half the church is seemingly over 75. I don't feel a need to confront it too much. Now on an individual level with somebody younger? Yes, absolutely. I'm conversant on where they're coming from and what I'm doing and we're not gonna play games. And they usually kind of shut up and go wow there's more than I realized. To me, once people do that, we can kind of learn. They've turned off the assumptions and are actually listening.

Hopefully you're making new friends. We've lost some over the years, dear people we great apart from, because their paradigm of quick fixes (say a verse, think the right thing, you'll be better) didn't quite fit our reality. We're the long slow haul, and I like to remind my dd that "Sin happens." There's just a lot of error out there.

I choose to spend my time, when I have a choice, around very positive people. Unfortunately, if the people aren't positive, I'd begin to move on. What happens when your kids are teens and trying to understand themselves and self-advocate and people (in that system/circle) are giving them dirty looks? If they have to HIDE everything, every single then, then they get that they don't fit in. People want to lead lives of integrity. Your kids need to be surrounded by uplifting, positive people who appreciate growth. If these friends are that way, fine. If they're not, you'll probably outgrow them at some point. 

Some kids can grow in thorns and sticky situations, and some kids need a lot of watering and extra nourishment to blossom. Your kids are going to blossom and be amazing, but to some people doing the amount of watering it will take is cow-towing, sinful, makes them feel guilty, whatever. They'll judge you and say you go too far, blah blah. You have to water your own kids the best you know how. Surround yourself with positive people who help you do that.

[Guest]

4KookieKids, I have told you before that I am an older mom. I have had plenty of opportunity to experience how cruel we females can be to one another sometimes. Hugs to you. It's why I say, my hubby is my best friend.

[Guest]

2 hours ago, nwahomeschoolmom said:

She actually implied that because of my son's behavior that he shouldn't even be learning piano.

 

It's just one ignorant person. Don't let it get you down! Maybe do an online search and see if you can find any teachers that have worked with kids with special needs. Hope you find someone soon!

Edited September 1, 2018 by Guest

[Pen]

22 hours ago, PeterPan said:

he safest thing is need to know basis. You give the amount of information necessary to keep the child safe in a given situation. I personally try not to give people information they aren't prepared to handle. Unless the person is a nurse, p-doc, whatever, they probably haven't got a CLUE what to do when you say "childhood bipolar," meaning you're just opening yourself up to their assumptions and stigmas and criticism

 

When I was in college the parent of a friend told a few of her dd s friends (including me) that the dd was manic-depressive, and what that meant,  and to please call someone (the parent, for example) if signs of trouble showed up. I think it was a huge help. 

Much better than trying to keep mum, and then no one realizes what is going on at an easy time to do something so that the kid spins out of control.  Sometimes taking down bystanders to their depression or mania in the process  

There were also some kids with AIDS which was fairly stigmatized, but also probably better to know than not. 

[PeterPan]

5 hours ago, Pen said:

There were also some kids with AIDS which was fairly stigmatized, but also probably better to know than not. 

I see where you're coming from, but I suspect there are laws and policies protecting and mandating privacy. Schools and public places, etc. already have policies for blood borne pathogens that handle this. I would be SHOCKED if students are being required to notify. Here's an example of a doc explaining how this is handled. I think it's Ireland maybe, but the same idea. https://www.nat.org.uk/sites/default/files/teachers-resources/HIV_in_Schools.pdf  In this document HIV status is considered a non-notifiable issue, and the students would NOT have their privacy violated over it. 

5 hours ago, Pen said:

When I was in college the parent of a friend told a few of her dd s friends (including me) that the dd was manic-depressive, and what that meant,  and to please call someone (the parent, for example) if signs of trouble showed up. I think it was a huge help. 

I have a loved one who began mental health treatment many years ago (30+), and at that time some of the medications used were experimental and many currently available were not out. The standards of care have changed and the ease of access of mental health support (for free) on college campuses has improved. To me, as a modern parent with a dc who has significant challenges, my take is the dc needs their mental health needs met through professionals. It's normal for the dc to disclose to a trusted circle of peers their needs, sure. For instance, my dd told her closest circle of friends why she doesn't drink caffeine, so they respect that and don't do anything ornery like bringing her full-power coffee or something, lol. She has a friend with seizures who needs help to go to the hospital sometimes. They do care for each other. But in this day and age, we would expect the dc to be ready to self-advocate, ready to manage his medications, ready to have weekly meetings with his health professionals to stay on track, and then it's a matter of choice to disclose, not dire straits.

I don't know, people are going to use their judgment there. If they think their dc needs that extra layer of support, they're probably going to do some back channel connection-making. But that's a pretty precarious position. It's something where it would be better if the young person were advocating for themselves, rather than mom doing it. But yes, adults do make friends with their college age kids' friends (FB, etc.) and have that avenue to communicate if they think something is off. 

Edited September 2, 2018 by PeterPan

[goldenecho]

I think it's natural to treat those things differently, not just because of the stigma, but because they are different.   Bipolar and autism are both things that can profoundly effect relationships, and can cause behaviors  that can be much more difficult for OTHERS,  while dyslexia and sensory processing don't tend to effect people around the child in the same way.

My mom had bipolar disorder (she passed several years ago...just felt the need to explain the "had" cause sadly as you know this isn't something that goes away).   When a very good friend of mine was diagnosed with bipolar and told me, I really struggled not to think of her differently, not because I was ignorant about the disorder but because I was all too familiar with it.   So, I understand your hesitancy to share with people about that.   I would tell people who need to know (caretakers, teachers), but I would wait to tell others until it was necessary (ie, maybe you don't need to tell a parent on the first play date at the park, or birthday invitation or whatever,  but you would want to let them know before the first sleep-over, or if their children started to play together regularly with yours).   If it were my child, I would want people to know eventually, but I wouldn't want it to be the first thing they know about my child.

 

Edited September 2, 2018 by goldenecho

[goldenecho]

On 8/31/2018 at 1:29 PM, 4KookieKids said:

 In part, I think I’ve just been burned by trying to talk to friends, and having them tell me I’m overreacting or that this is just normal for children. But it’s just so much easier to talk about dyslexia, as it’s understood that it’s not the kids fault, not my fault, and it’s not a behavioral issue. Things like autism and bipolar, I often feel like people assume I have done something wrong, and my parenting skills are just in adequate. 

 

Just wanted to add that I'm sorry that people have dismissed what your child is going through like that.    What your child has is so difficult, both for him and for you and it is NOT YOUR FAULT.   It must be really hard, especially when behavior comes out in front of  people who don't know you well or your child's situation.  We get so much judgment as parents, and it's worse when we're dealing with something people don't understand.   Wish I could give you a big hug.      

Edited September 2, 2018 by goldenecho

[PeterPan]

The other twist is genetics and how your take would change, what labels you identify with, would change if you got genetic information on underlying causes, possible syndromes, etc. Have you done the SPARK study yet? 

[4KookieKids]

3 hours ago, PeterPan said:

The other twist is genetics and how your take would change, what labels you identify with, would change if you got genetic information on underlying causes, possible syndromes, etc. Have you done the SPARK study yet? 

 

We did participate in SPARK, but haven’t heard anything back from them, and they said we might not get any information back at all.

To be clear, this isn’t just one kid, and the bipolar label isn’t official (yet?), but it’s the one most of our professional team keeps bringing up for this one child, while our psych  flat out won’t evaluate for it because she says it’s too hard to distinguish from adhd at this young age. That’s fine with us- we weren’t looking for a label and are not (currently) interested in meds, though that may change down the road. I have at least three immediate family members and an additional 4-6 extended family members with bipolar, so It’s not completely foreign to me... but we’ve also seen it managed very poorly and want to focus on things besides meds for now is all. 

I felt he need to clarify just so I didn’t feel like i was giving a false impression. ? 

[Crimson Wife]

1 hour ago, PeterPan said:

The other twist is genetics and how your take would change, what labels you identify with, would change if you got genetic information on underlying causes, possible syndromes, etc. Have you done the SPARK study yet? 

Unfortunately the ignorant people who think you can just spank the autism away won't be swayed by a genetic cause being discovered for the child's condition. BTDT.

[PeterPan]

2 hours ago, 4KookieKids said:

want to focus on things besides meds for now

Then look up methylation issues, because it's pretty astonishing when you dig in. In fact, to my mind it's downright scandalous that they give the meds without looking at the underlying physical problems. And there are studies showing a strong correlation between parents with bipolar and a higher incidence of autism in the offspring. In other words, it's not merely coincidence. Under-methylation issues are super common in autism, but we're talking about the other type with the bipolar and aggression, things like COMT defects, VDR defects, TPH2 defects etc., that lead to high methyl levels. I'm even finding screwy things like people (me, others I know) who have BOTH the under-methylation defects AND the COMT/VDR/TPH2 stuff going on! That's screwy hard to treat.

I'm not anti-med, but I really like that we can finally actually run genetics and see more of what is going on. Just the cheapest $69 test on 23andme will do. You run it, download the raw data, then run it through other engines, boom.

56 minutes ago, Crimson Wife said:

Unfortunately the ignorant people who think you can just spank the autism away won't be swayed by a genetic cause being discovered for the child's condition. BTDT.

Truly. I'm getting that now in church. People don't even try anymore, and I think it's because they have this preconception that if you have a dc age 9 you should be able to FORCE things. And ain't nobody working with autism and aggression thinking force is a good idea. More like collaboration, support, helping them get there. But that doesn't fit with the power dynamic they want, doesn't make you look like a good parent, sigh.

[PeterPan]

2 hours ago, 4KookieKids said:

We did participate in SPARK, but haven’t heard anything back from them, and they said we might not get any information back at all.

I've been meaning to look up ours and see if there's a status or something. Don't know. That would be a bummer not to learn ANYTHING, mercy. But no, I think if you want detailed info and raw data to look through you'll probably need to pay for something yourself. Might be worth it with the type of signficant issues you've got going on. We found actionable stuff in ours.

[Lecka]

Things have gotten easier here.  I am not sure of your kids’ ages, kookie, but when my son got old enough that he didn’t just look like a wild toddler-pre-school aged child, I suddenly got treated like I was the best parent in the world, people “didn’t know how I did it.”  Stuff like that.

I have had several people, relatives and at church, who are good with kids and want to test and see if they can be so good with my son.  Every time they have come back going “that didn’t go how I thought it would” and saying more positive things about me.  One time a man who is very good with kids actually volunteered in the church nursery to see how he could do with my son for two hours, and he came out and said “I couldn’t even get him to look at me,” and then it was kind-of like — other people heard about it and thought “oh there is some problem.” I think he had good intentions to give me some encouragement and parenting advice; I didn’t know about it ahead of time.  But actually that man and his wife were very nice and went out of their way a lot with my son.

A lot of good-faith efforts used to just not work, and that was very disheartening and frustrating.

My son has progressed now to where good faith efforts work out great.  We moved and go to a little church now, and he helps with offering most Sundays, and Sunday School is going well.  For whatever reason there are a lot of people at this church who have foster kids or do respite care for foster kids, and so they all think I am a great parent and are also very sympathetic to children.  

Edited September 2, 2018 by Lecka

[Guest]

4KookieKids, I remembered that you had said the bipolar was not officially diagnosed. I thought this was more of a general, want to know for the future should we get the diagnosis, type of question. I did not know family history. I can see now why you are thinking through this now!

If you noticed, I did not touch the bipolar part of your question. We have no diagnosis like that here, or even a possibility of it, and no family history on either side of any mental illness of any kind (ETA: That I know of! I have an extremely large extended family back home). I don't know anyone with a bipolar diagnosis at all, so it would not be a fair statement to assume what I would or wouldn't do. It's hard! Sorry you have that on top to be concerned with! 

Did you by any chance see my comments about reactive hypoglycemia? Just something to look into. I am once again ensuring my son gets plenty of protein snacks as I did in the past and I have seen a difference in many ways. Let me know if you want me to link the post or quote the info. I remember giftedness was also on the table and it is commonly found (I can't remember the percentage) in gifted children. You can find more info on it in the book I mentioned to you before, Misdiagnosis and Dual Diagnoses of Gifted Children and Adults. I had chosen to set aside the giftedness up to now, but now I am looking into books because I want to consider everything and how it affects my youngest son in particular. 

Also, look into privacy issues with companies like 23andMe. You may not have an issue with it personally, but I thought it might be good to know before going ahead with it. I had started a thread on that a while back as an fyi.

Keeping you and your family in my thoughts and prayers,

M

Edited September 2, 2018 by Guest

[4KookieKids]

I will look into that book  and reactive hypoglycemia and see if our Ped can check it. It would be great if her issues really were as simple as blood sugar. ?

[4KookieKids]

PS it was sort of intended to be a more general thread, but maybe it was also a bit of a rant because life feels lonely sometimes. But also I had just been really checking my own heart when I realized how easily I share dd’s dyslexic struggles, and contrasted that with how unlikely I am to share mykids’ Other struggles. The point made above about how different struggles affect others vs the individual is an interesting one.

[Guest]

5 hours ago, 4KookieKids said:

I will look into that book  and reactive hypoglycemia and see if our Ped can check it. It would be great if her issues really were as simple as blood sugar. ?

I hear you! I have never followed anything I have tried with my boys as a cure. When it is relevant to the specific child then it could help with functioning. It has been the same with the gluten and casein free diet for us. 

It's something I thought you could look into that may help in some way and is risk free.

Edited September 3, 2018 by Guest

[Guest]

5 hours ago, 4KookieKids said:

PS it was sort of intended to be a more general thread, but maybe it was also a bit of a rant because life feels lonely sometimes. But also I had just been really checking my own heart when I realized how easily I share dd’s dyslexic struggles, and contrasted that with how unlikely I am to share mykids’ Other struggles. The point made above about how different struggles affect others vs the individual is an interesting one.

Many hugs to you.

Here's something I think is good for all of us to remember:

Quote

1 Corinthians 12:12-27 New King James Version (NKJV)

Unity and Diversity in One Body

¹² For as the body is one and has many members, but all the members of that one body, being many, are one body, so also is Christ. ¹³ For by one Spirit we were all baptized into one body—whether Jews or Greeks, whether slaves or free—and have all been made to drink ^[a]into one Spirit. ¹⁴ For in fact the body is not one member but many.

¹⁵ If the foot should say, “Because I am not a hand, I am not of the body,” is it therefore not of the body? ¹⁶ And if the ear should say, “Because I am not an eye, I am not of the body,” is it therefore not of the body? ¹⁷ If the whole body were an eye, where would be the hearing? If the whole were hearing, where would be the smelling? ¹⁸ But now God has set the members, each one of them, in the body just as He pleased. ¹⁹ And if they were all one member, where would the body be?

²⁰ But now indeed there are many members, yet one body. ²¹ And the eye cannot say to the hand, “I have no need of you”; nor again the head to the feet, “I have no need of you.” ²² No, much rather, those members of the body which seem to be weaker are necessary. ²³ And those members of the body which we think to be less honorable, on these we bestow greater honor; and our unpresentable parts have greater modesty, ²⁴ but our presentable parts have no need. But God composed the body, having given greater honor to that part which lacks it, ²⁵ that there should be no ^[b]schism in the body, but that the members should have the same care for one another. ²⁶ And if one member suffers, all the members suffer with it; or if one member is honored, all the members rejoice with it.

²⁷ Now you are the body of Christ, and members individually.

https://www.biblegateway.com/passage/?search=1+Corinthians+12%3A12-27&version=NKJV

Because I love Reba and both my 9-year-old and I find this song inspiring, I'm linking it for you.

 

I'm taking off again and won't be posting for a while. I just want you to know that I will keep you in my prayers. God has always given me comfort and guidance throughout my life, and He has never let me down or turned His back on me.

Blessings,

M

Edited September 3, 2018 by Guest

[popmom]

On 9/3/2018 at 5:35 AM, 4KookieKids said:

PS it was sort of intended to be a more general thread, but maybe it was also a bit of a rant because life feels lonely sometimes. But also I had just been really checking my own heart when I realized how easily I share dd’s dyslexic struggles, and contrasted that with how unlikely I am to share mykids’ Other struggles. The point made above about how different struggles affect others vs the individual is an interesting one.

 

I can appreciate this. I have similar struggles. I often feel lonely. My youngest dd is 12 and has level 1 autism. I say Asperger’s. She knows. She’s very self aware. She also doesn’t mind telling people. It’s  not like she advertises it to everyone she meets, but most of the kids at church know. That worries me. I mean, I’m so proud of her and so glad it’s not a source of shame for her, but there is still so much ignorance. I have decided that the energy behind my worry is pride and a little fear. That’s antithetical to my faith. 

I have two other kids who are “outside the box” because of mental illness. I’m actually more scared for how they will be judged. I feel like the neurodiversity movement has made autism more accepted and even appreciated by some, but mood disorders, personality disorders, impulse control disorders, OCD... I feel like there’s still very much a stigma. (I listed a bunch w out specifying what my own kids are dealing with—just suffice it to say, they both have life threatening mental illness apart from excellent care). My 21 yr old has shared her diagnosis with a few close friends because she wanted to explain some things. She just wanted them to understand. 

But my pride kicks in again and says if people find out, she’ll never get married. Her friends will alienate her. Etc etc. and yes I know marriage isn’t and shouldn’t be THE thing, but my mama heart... I’m choosing to trust that God will use all of this for the good of my family and for his glory. 

Sidenote...if you are as bone weary as me and you’re okay with a Christian perspective, I just finished a book called Different. The Story Of an Outside the Box Kid and the Mom Who Loved Him. Sally Clarkson is the author. Y’all, I did NOT want to like this book. I had pretty much sworn off any and all female Christian writers and bloggers.  Very skeptical. There’s probably something wrong with me. I’m insecure or something. I just can’t relate to most of them. I’m so...regular. not an overachiever type. Anyway, I found beauty and encouragement on every page. And it really speaks to this issue we’re discussing. 

Edited September 12, 2018 by stephensgirls

[popmom]

I’m also going to add... my church has been amazing, and I realize this is not the case for many. I have been amazed at how God has placed me in circles where so many families are in a similar place with disabilities and/or mental illness. I actually feel safe with these people. They are not the ones I worry about. I mean I never would have dreamed that my friend from church and neighbor down the street would have more than one child with the same diagnosis as mine. I mean this weird specific diagnosis that I was so worried about what people would think. And one day this neighbor/friend/fellow church member stops by while on a walk to update me on her dd who had been hospitalized, and she just came right out and told me...”now they are thinking it’s this on top of this”. I was blown away and so grateful that I could say, “really?? My daughter, too!” I know this is not the experience for most in church. And sometimes I question, why God? Why so many of our young people? I may never know entirely, but I know He’s made us family. We’re stronger together.

Edited September 12, 2018 by stephensgirls

[PeterPan]

6 hours ago, stephensgirls said:

Sidenote...if you are as bone weary as me and you’re okay with a Christian perspective, I just finished a book called Different. The Story Of an Outside the Box Kid and the Mom Who Loved Him. Sally Clarkson is the author.

Oh that's interesting! I'll have to go look it up. I read some Sally Clarkson stuff YEARS ago, when I was first starting off homeschooling. That explains why she was different, in the why are you whacking your kid so much and calling it christian discipline camp...

6 hours ago, stephensgirls said:

if people find out, she’ll never get married. Her friends will alienate her. Etc etc. and yes I know marriage isn’t and shouldn’t be THE thing, but my mama heart...

That's a funny issue. There are SO many women (and fathers!) with spectrum and other things here on the board that it's really not like oh have this, never get married. Some people's mixes are functional and they find someone who enjoys being with them or whom they can put up with. And then we probably all know people who DON'T have labels anywhere even CLOSE to autism who don't get married, partly because just their mix is a little harder to deal with.

For my ds, whose support level is 2, I have in my mind what would help him be easy to live with? I don't want to harp on it, because frankly I don't want to build that expectation or to have him think he's a failure if he ends up alone. But just in my mind, I keep that quiet thought of what courtesies, what aspects of social thinking would help him be easier to live with, so that if he WANTED to have a biological mate or a housemate or whatever, he could. And some of that is really basic stuff, like if I talk to you, respond, when you leave, say something pleasant like goodbye, be able to pick up your laundry, etc. I think basics like that go a long way. Emotional regulation, and knowing how you feel and being ready to be a giving person, goes a long way. 

So there are people who are socially typical who are hard to live with and people with autism who get married just fine. It's not really a pat thing. I try not to think about it too much though, because I don't think I'd like it if I knew the future. I choose to believe good things, like we'll be happy no matter how it pans out with him and we'll help him have a good life no matter what.

I think on the flipside, unfortunately it's stuff that has to be disclosed in dating. 

6 hours ago, stephensgirls said:

I’m also going to add... my church has been amazing, and I realize this is not the case for many.

Yeah, I don't know why it hasn't been working out for us, sigh. With dd we had that sense of community. With ds we've gotten more isolated. Well that's why, duh. He's just very hard to take to church. He's only now starting to get language to tell me WHY even. Like last night I was trying to read his Bible story book to him, and he was having behaviors, and I'm like WHY are you doing that, you were just sitting fine through Little House and now you're getting all squirrelly on me for the Bible stories, WHAT IS GOING ON?? He's like well with Little House I get mental pictures and with the Bible story book I don't so then it's really boring!!

Jaw drop.

And we know he has language issues, but I thought he was understanding. But apparently whatever he was understanding wasn't enough, and in his little gifted/ASD combo brain, it's not acceptable to listen and not have any brainpower left to visualize. And he has behaviors through church too. And it's just hard, because even though it's theoretically a workable situation, we're not there enough for people to pair and bond with him. And why don't they make that effort? Because he's having behaviors and not there enough. So then, without that social motivation, he doesn't have the extra joy or support or motivation, sigh. A vicious circle. And I don't know whether I should change and try another place or find a solution. I don't know. It's ridiculous. And some of it is them. Not all, but some. I asked for help and they were scared and overwhelmed and decided it was too hard and that they were too busy. They also seem to revel in being luddites, because they can't bother to reply to emails, etc.

So I don't know. That's just a vent. I haven't sorted it out. I've actually been putting my brain energy into taking care of myself instead, which needed to be done. We're running labs, starting me on some thyroid meds, tweaking stuff. I totally neglected myself the last year especially, trying to do all these things for him. It worked and they were great, but now it's my turn. But yeah, the response from the church has pretty much communicated NOT WANTED. And if you asked, they'd be like oh no that's not what we meant!! But that's the de facto effect. And I don't know that it would be better anywhere else I would try, sigh. 

[Lecka]

Posted to wrong thread!

Edited September 13, 2018 by Lecka

[Guest]

I gave up on organized religion since my twenties for many and various reasons. This is what I follow:

Quote

Matthew 18:20 (KJV)

²⁰ For where two or three are gathered together in my name, there am I in the midst of them.

 

[Guest]

3 hours ago, Lecka said:

First, you aren’t helpless as far as your baby.  Check out https://www.amazon.com/Early-Start-Your-Child-Autism/dp/160918470X/ref=nodl_

Purposeful interaction is great, it can be nice to get more ideas too for how to make it happen.  

Something I have had trouble with is sibling issues.

It’s common for a sibling to try to be perfect, or expected to be perfect by parents.  One, it’s possible — they can do it.  Two, their problems seem small in comparison.

I didn’t realize it but I was being like this to my kids, having unfair expectations of them

and not taking their problems seriously.  It’s something to be aware of, I had never heard of it.  

It’s a very hard balance!

 

Lecka, I believe you may have meant this for the retained reflex thread?

[kbutton]

Seconding Sally Clarkson! I don't have the book mentioned, but I feel like their materials are "safe" from a discipline standpoint and that while kids with differences might need their suggestions tailored, the overall philosophy fits the "parent the child in front of you...even if the are not NT" paradigm pretty well. 

On the dating/marriage thing, I worry about them choosing a spouse that's not ready for their needs. My kids will probably be mostly fine in the day-to-day and job aspects of life if they can find a career that's comfortable for their strengths, but I know that it's hard to be married to someone who lacks some expected skills (and not just the niceties--I mean things like planning ahead, thinking flexibly, etc.). I don't want the spouse to be overly positive and think they can fix everything (Oils! Meditation! You've outgrown this!)--I want them to go in eyes wide open and work out a plan. Also, because one of my kids has serious medical issues that will affect him later in life, I don't want him to get a spouse that discounts that. I think I imagine him getting a spouse that downplays the physical restrictions he'll have, forces the issue by urging him to do things that aren't a good idea ('You've gotta live a little--what's the use in being healthy if you can't Really Live"). Hopefully he'll have more common sense, but I've heard some frank talks from professionals that deal with this health condition, and they say teens and young adults frequently respond to a growing awareness of their condition with stupid decisions, and that timeframe overlaps with a common time to find and select a mate. Sigh.

[popmom]

3 hours ago, Moved On said:

I gave up on organized religion since my twenties for many and various reasons. This is what I follow:

 

 

If you’ve been hurt by the church, I’m sorry. It’s a huge problem. Every single person in the church is sinful. I know condition of my own dark, dark heart. In many churches I believe God has graciously restrained those dark hearts. In some the sin has caused many deep wounds. Whatever your reason, I’m with you. You are the primary ambassador of Christ to your children. You reflect God’s character and traits in a way that no one else can. You are descipling your kids instead of turning over the responsibility to the church. That is amazing. 

Sorry for the hijack. 

[popmom]

10 hours ago, PeterPan said:

Oh that's interesting! I'll have to go look it up. I read some Sally Clarkson stuff YEARS ago, when I was first starting off homeschooling. That explains why she was different, in the why are you whacking your kid so much and calling it christian discipline camp...

That's a funny issue. There are SO many women (and fathers!) with spectrum and other things here on the board that it's really not like oh have this, never get married. Some people's mixes are functional and they find someone who enjoys being with them or whom they can put up with. And then we probably all know people who DON'T have labels anywhere even CLOSE to autism who don't get married, partly because just their mix is a little harder to deal with.

For my ds, whose support level is 2, I have in my mind what would help him be easy to live with? I don't want to harp on it, because frankly I don't want to build that expectation or to have him think he's a failure if he ends up alone. But just in my mind, I keep that quiet thought of what courtesies, what aspects of social thinking would help him be easier to live with, so that if he WANTED to have a biological mate or a housemate or whatever, he could. And some of that is really basic stuff, like if I talk to you, respond, when you leave, say something pleasant like goodbye, be able to pick up your laundry, etc. I think basics like that go a long way. Emotional regulation, and knowing how you feel and being ready to be a giving person, goes a long way. 

So there are people who are socially typical who are hard to live with and people with autism who get married just fine. It's not really a pat thing. I try not to think about it too much though, because I don't think I'd like it if I knew the future. I choose to believe good things, like we'll be happy no matter how it pans out with him and we'll help him have a good life no matter what.

I think on the flipside, unfortunately it's stuff that has to be disclosed in dating. 

Yeah, I don't know why it hasn't been working out for us, sigh. With dd we had that sense of community. With ds we've gotten more isolated. Well that's why, duh. He's just very hard to take to church. He's only now starting to get language to tell me WHY even. Like last night I was trying to read his Bible story book to him, and he was having behaviors, and I'm like WHY are you doing that, you were just sitting fine through Little House and now you're getting all squirrelly on me for the Bible stories, WHAT IS GOING ON?? He's like well with Little House I get mental pictures and with the Bible story book I don't so then it's really boring!!

Jaw drop.

And we know he has language issues, but I thought he was understanding. But apparently whatever he was understanding wasn't enough, and in his little gifted/ASD combo brain, it's not acceptable to listen and not have any brainpower left to visualize. And he has behaviors through church too. And it's just hard, because even though it's theoretically a workable situation, we're not there enough for people to pair and bond with him. And why don't they make that effort? Because he's having behaviors and not there enough. So then, without that social motivation, he doesn't have the extra joy or support or motivation, sigh. A vicious circle. And I don't know whether I should change and try another place or find a solution. I don't know. It's ridiculous. And some of it is them. Not all, but some. I asked for help and they were scared and overwhelmed and decided it was too hard and that they were too busy. They also seem to revel in being luddites, because they can't bother to reply to emails, etc.

So I don't know. That's just a vent. I haven't sorted it out. I've actually been putting my brain energy into taking care of myself instead, which needed to be done. We're running labs, starting me on some thyroid meds, tweaking stuff. I totally neglected myself the last year especially, trying to do all these things for him. It worked and they were great, but now it's my turn. But yeah, the response from the church has pretty much communicated NOT WANTED. And if you asked, they'd be like oh no that's not what we meant!! But that's the de facto effect. And I don't know that it would be better anywhere else I would try, sigh. 

 

Im glad you’re taking care of yourself. I’m ready to do that for myself. I’m currently on a forced break from certain responsibilities because of a broken ankle. It’s been a weird experience.

I’m sorry your experience with church has not been what it should be. Sadly, I think it’s the case for most in our situation. That was my experience up until we moved in 2010 and found our current church.

what Bible story book do you have? I love, love, love the Jesus Storybook Bible by Sally Lloyd-Jones. Not sure how it is for mental pictures. That’s so interesting.

The church has much work to do to effectively minister to families with special needs kids. I’ve had to repent myself over my younger years of being insensitive and not wanting to be bothered. Then years went by and my kids became what God has designed them to be, and I’m learning. Definitely humbled. There are some churches in my area who are making this a priority—ministering to families and SN kids and adults. I’m hoping they will be a light and an example to other churches. 

Looking forward to a time when kids like your son will seen and welcomed and loved by their churches. I’m praying for this.

Edited September 12, 2018 by stephensgirls

[Guest]

1 hour ago, stephensgirls said:

 

If you’ve been hurt by the church, I’m sorry. It’s a huge problem. Every single person in the church is sinful. I know condition of my own dark, dark heart. In many churches I believe God has graciously restrained those dark hearts. In some the sin has caused many deep wounds. Whatever your reason, I’m with you. You are the primary ambassador of Christ to your children. You reflect God’s character and traits in a way that no one else can. You are descipling your kids instead of turning over the responsibility to the church. That is amazing. 

Sorry for the hijack. 

Like I mentioned there are many and various reasons. I don't allow the past to influence my decisions or my life, but I do take lessons learned from it. I read a lot and have found that there is a lot I do not agree with. I want my boys to think for themselves and be brave and question things that do not make sense to them. I have posed questions that were never answered adequately, so I let the Bible interpret itself. I object to how God's Word is used to further human interests. So, it's not what you think ?.

Edited September 12, 2018 by Guest

[popmom]

50 minutes ago, Moved On said:

Like I mentioned there are many and various reasons. I don't allow the past to influence my decisions or my life, but I do take lessons learned from it. I read a lot and have found that there is a lot I do not agree with. I want my boys to think for themselves and be brave and question things that do not make sense to them. I have posed questions that were never answered adequately, so I let the Bible interpret itself. I object to how God's Word is used to further human interests. So, it's not what you think ?.

 

I kinda figured... That’s why it was an if post. ? I’m glad that’s not the reason.

Edited September 12, 2018 by stephensgirls

[popmom]

“So there are people who are socially typical who are hard to live with and people with autism who get married just fine. It's not really a pat thing. I try not to think about it too much though, because I don't think I'd like it if I knew the future. I choose to believe good things, like we'll be happy no matter how it pans out with him and we'll help him have a good life no matter what.”

Peter Pan, I love this. 

[maize]

4 hours ago, kbutton said:

Seconding Sally Clarkson! I don't have the book mentioned, but I feel like their materials are "safe" from a discipline standpoint and that while kids with differences might need their suggestions tailored, the overall philosophy fits the "parent the child in front of you...even if the are not NT" paradigm pretty well. 

On the dating/marriage thing, I worry about them choosing a spouse that's not ready for their needs. My kids will probably be mostly fine in the day-to-day and job aspects of life if they can find a career that's comfortable for their strengths, but I know that it's hard to be married to someone who lacks some expected skills (and not just the niceties--I mean things like planning ahead, thinking flexibly, etc.). I don't want the spouse to be overly positive and think they can fix everything (Oils! Meditation! You've outgrown this!)--I want them to go in eyes wide open and work out a plan. Also, because one of my kids has serious medical issues that will affect him later in life, I don't want him to get a spouse that discounts that. I think I imagine him getting a spouse that downplays the physical restrictions he'll have, forces the issue by urging him to do things that aren't a good idea ('You've gotta live a little--what's the use in being healthy if you can't Really Live"). Hopefully he'll have more common sense, but I've heard some frank talks from professionals that deal with this health condition, and they say teens and young adults frequently respond to a growing awareness of their condition with stupid decisions, and that timeframe overlaps with a common time to find and select a mate. Sigh.

 

I'll share a bit of my perspective as the spouse of a person with both physical disabilities and mental health struggles.

I didn't really understand the scope of the physical disabilities when we were married--because quite frankly he didn't understand their scope. He came from a family that were very good at being positive and encouraging and not so good at facing harsh realities. I mistook the mental health problems, to the extent that they manifest before our marriage, for poor self esteem and didn't understand them beyond that.

Would I have married him had I known everything that lay ahead of us? Maybe not. Which of us would choose to face the greatest challenges of our life if we knew ahead of time just how hard they would be and were given the choice outright to accept or refuse them?

Do I regret marrying him? Not at all. We've been through some rough times, I don't see our lives ever being easy--but he is and remains my second half. I love him, I love the family we have built together. I hope to some day stand beside him when all the illnesses and disabilities of this life are gone and he is whole and bright as the person I see in glimpses when he is well enough.

 

[Storygirl]

Maize, that is beautiful. Thank you for sharing.