How much do you share with others in town...

[WNC Gal]

Hello - we live in a pretty small town and my husband is well-known for his work in town - so we have kept our daughter's condition "hush hush". I understand the importance of reducing the stigma of mental health-related issues, but in a small town where people view "transplants" from other areas with suspicion, I think they would be VERY leary of contact with our family and probably blame it on parenting skills, or religion (or lack thereof). I guess I just feel that I want our other kids to be seen as perfectly normal and not have others watching them intently to see if they show any signs of their older sibling's issues.

But, when my daughter returns home from her residential program, we'll need to be more honest with at least the families of the kids she hangs out with. Since she became so severely ill, she has not spent time at other friend's homes - primarily because we KNEW that she would potentially be in danger of having access to things like medications, blades, and heaven forbid, guns. At our home, everything is as secure as can be. But how in the world would another family even take on the risk of having our (formerly suicidal) daughter spend the night???

And, I recall in the years prior to this nightmarish year of my child's descent into psychiatric oblivion, that I was always worried about other kids being a "bad influence" on my daughter and even being alarmed that one of her friends was taking not only ADHD medications, but an anti-depressant too. "Oh the horror!". Now my little girl has been on at least 10 different medications in the past year and had all sorts of encounters with the ER, police and ambulances while suicidal. I certainly have changed my views on kids with medications !

I have heard various ideas of how to explain it to others:
She suffers from a metabolic disorder
She has a brain disorder
She has a mood disorder (sounds like she could be angry and dangerous - not true!).
She is away at a private school which can meet her medical needs.
(Hmm...quite a different impression than she is locked in a Level 5 psychiatric hospital!).

Any guidance you can offer would be great! Especially on how to cope with people who ask questions that you think will not be so kind once they know the truth......

 

[Marguerite]

This is a hard one. Not telling people is risky and they won't thank you for it. Also, not telling them is an immediate vote of no confidence in their abilities to cope with the information and support you, so those who WOULD be understanding may be less happy if you don't seem to trust them. But you are right to be concerned about throwing the information around too freely, because there IS stigma, and a lot of people CAN'T cope with the information. They worry that their little Johnny or Fiona would be tainted by contact with your defective child.

Sometimes it's fairly obvious that this child is different. In those circumstances, you need to say something. I've known people to agonise over what to say to the parent of their child's friend, because they perceive something is wrong but the parents don't seem to want to acknowledge it. If they know it's being taken care of, these worries can go away.

Someone with more specific experience may be able to help you more. For us, the problem is autism and we do tend to lean heavily on "different brain wiring", "communication disorder" and "inability to learn social interaction the usual way". We have to say something, because it's obvious to any adult who spends more than a few minutes around him. Some people can cope with the information and others can't. We stay away from those who can't, because this attitude DOES percolate down to their kids who often can be very cruel to those who are different or 'flawed'. You can often recognise these people before you ever need to say anything - they are often the ones who are fitness or health freaks but are motivated by personal fear of any infirmity. This doesn't mean avoid all people who eat sensibly and go jogging, just that a subset of this group are common offenders here. Or they are people who need to know exactly where they stand with others; preferably at the top. The social climbers, those who view status as all-important. Avoid them too.
Also, say nothing to gossips. Say as little as possible and expect what you DO say to be broadcast, so make sure your message is brief and clear. Ask for confidentiality; just don't expect it.

What we've done - we organised "Sixth Sense" at the school, I wrote a couple of articles in the local paper, and apart from that I talk to only those parents of other kids who really need to know. difficult child 3's best mate also has mild autism - it was the friendship of both boys that made the diagnosis clear in the young friend. These boys understand one another as nobody else seems to understand them. But friend's mother is a gossip - she just can't help herself - so I'm choosy about what I tell her. Just the facts, ma'am. We get on well but I make sure we're only talking about the weather, or politics, or the latest news about Paris Hilton (you get the drift). Mostly, I listen.
Neighbours over the road - also gossips, but nice people. difficult child 3 plays there, too. They seem to understand him and are lovely with him. But because of "Sixth Sense" and my articles, although that was a few years ago, the general information is about town - "difficult child 3 is autistic, he's a bright boy but can react oddly." probably added to that is, "Watch out for his mother, she watches him like a hawk, she's a dragon." And I know a few people also value my activism, and use it when they need a hand. I make myself useful to those who ask for my help and don't interfere when my help is not wanted. It means I build up 'brownie points' so people are generally glad to see me, not running a mile because they think, "What does she want me to do for her NOW?"
An occasional cake, packet of home-made biscuits or bottle of home-made jam can be a wonderful social lubricant, especially if you give it with no expectation of anything in return. How is this relevant? It sends a clear message, "I'm not a whinger who always leans on other people. I am productive too and I raise my kids the same way." People are nicer to you if they think you could be useful to them too, in some way. My father taught me to never be beholden to other people. Always return favours and even build up a few when you can. And I've known too many emotional spongers, who drain a person dry then move on to their next victim with their sob story of how hard life is. I don't want to be seen as one. being disabled with autistic kids, it's very easy for this to happen and I have to work even harder to prevent people getting this idea.

What I guess seems to have worked best - when difficult child 3 goes visiting, I go too. Not to stand over him and watch him, but to sit in the kitchen and chat with the friend's mother. I'm there if needed but that's only coincidence. If I feel it's OK, I might leave quietly for a while, go and do my washing then go back with maybe a recipe or knitting pattern to discuss with friend's mother. It keeps things very informal and it also give me the chance to say what I might need to say, after I've had a chance to get a 'feel' for the other person and what they can cope with.

Some people welcome difficult child 3 in, they even ask him to come over and play. Some kids do too - but most do not. Formerly close friends difficult child 3's age simply have moved on socially, while he has not. I don't blame them, but they relate to difficult child 3 as they would to a sometimes annoying but generally loved baby brother. They look out for him but live their own lives.

It's lonely a lot of the time, but this would still be happening if we were mainstreaming him - it might even be worse, with him being bullied more. But those kids who are his true friends - they are wonderful indeed and make up for everything else. We take what we can get and make opportunities where we can.

Marg

 

[DammitJanet]

It depends sometimes on who I am talking to on how I reveal my diagnosis. If I am comfortable with them I will come right out and just say I have bipolar and borderline. If not, sometimes I will say I have neurochemical disorder.

 

[On_Call]

I also guess that I alter what I say depending on who I'm talking to, but all in all, over the years, I've decided that I care less and less what others think - and just spill the beans if it's appropriate. I know too well that look of "I'd never" give medications, etc., but I figure if they know me well enough that I'm telling them, they'll either understand or not - I know that I cannot do anything about that.

Most people are very understanding - considering the small town we live in where everyone knows everyone - and those who don't know what's going on tend to make something up anyway. A co-worker once overhead some girls from another office in town saying that my father had also been severely depressed (which he was not) so that it made sense that difficult child had problems. My co-worker (who is AWESOME) stepped in to tell them if they really wanted to know what was going on - or wanted to check and see how we were doing - that they ought to ask me directly.

It's a hard call to make. I guess we decide on a case to case basis who needs to know what and at how much they need to know in that situation.

Good luck.

 

[IMSnoopee]

Hi there...

I'd like to first state a disclaimer -- If I offend you, please try to understand that this is going out to you and others as a "possibility".

Have you considered that you may be projecting your own once-upon-a-time judgements onto the people of your small town?

I once lived in a small town - a few, actually - and I never knew everyone who lived there. Despite me working in the only restaurant. Or even when I lived in the tiny town with one gas-station market and one pub, I didn't know everyone.

Do you think perhaps they won't even care? They may see your family as good people and might just give your family kudos for working so hard for your family.

And you might just be the catalyst that informs the ignorant, because not all that are ignorant are blissful.

But I do feel your concerns. I was freaked out when my son was first having so many problems at pre-school, then regular school, then his IEP classroom. Now I just say my son has mental health issues. Either they understand or not. If they ask questions, I'll inform.

I have enough to worry about and enough guilt to deal with to worry if the 'town' is scared of my child with mental health issues. Usually our fears are just fears -- when we face them, they aren't as scary as we thought. Except speaking in public for me. Despite my attempts to do it, I still get freaked out, but I'm working on it.

Good luck!

 

[CAmom]

Marg,I just happened by here, and your post, in response to SMZ's, reminded me of some of the much, much more benign situations we dealt with during our son's younger years related to his diagnosis of ADD.

Your post demonstrated such caring and compassion in terms of the challenges that we and our children face. I'm awed...

 

[Marguerite]

Thanks, CAmom. I guess it's because so many of us are going through the same sort of thing.

Isla, welcome. I see you are a single mother who works outside the home - this could be why you didn't get to know so many people in the small towns where you've lived. Small towns can be like that - they can be welcoming and extremely friendly, or they can be polite but with closed doors. Or they can be the worst place on earth. Sometimes it's the town but mostly it's how you interact with it (and how your lifestyle/work/family lets you).

Ours is a small town. When we first moved here we were told we had a choice - we could join in and get heavily involved, or we could live a private life. Because husband & I were both working long hours, we couldn't have joined in if we'd wanted to. We got to know a handful of people only. Then when our life eased back a little, we got more involved and met more people. What we did was appreciated and brought us into contact with more people.
With several thousand people now the village is bigger than when we first moved here, I no longer know everyone. Also, a lot of newer arrivals are like we were - working long, hard hours and too busy to do more than sleep at home. Sometimes I feel more of a stranger now, especially with difficult child 3's schooling keeping me away from the usual social contact. But some things I've found don't change - people are basically selfish (human nature) and will always put their own families and own needs first. It's natural. And people will always tend to gossip. Even our best friends will be tempted. It's not necessarily done out of malice, it's just that MY personal information means more to me than to my friend. If I confide in my friend and DON'T clearly specify, "This is confidential," many friends will assume what I have passed to them is now "on the open market" and many gossips HATE being thought of as the last to know, or even not the first! So if there is something I really want to keep to myself, I don't even tell my best friend. That way, she doesn't have to guard her mouth on my behalf. I'm much more motivated to keep stumm than she is. It's natural.

But some things have to be shared, if we have to live side by side with these people. So I tell what I need to, to whom I need to, and hope.

Another small town problem (in some cases) - the local malicious gossip. This is a person who wishes you evil. They exist. They are motivated by an enjoyment of being in control of other people's fortunes; or by jealousy; or simply by the enjoyment of tinkering with other people's relationships. We've had two of these in our village in recent years. The only way to cope with them is to cut off their source of information about you, and to try to stay below their radar. These people are fairly rare, but when you have one interfering in your life you need to deal with it - find out what is motivating them, why they are attacking, then try to switch it off. I don't like the thought of having to 'back down' with people like this (I don't want them to think they've won, by driving my activities underground) but if you can stay below their radar they eventually lose interest and find other, more satisfying victims. Never confront, never show you are upset.

Just remember this - not all difficult children have parents like us. Not all difficult children grow up to be nice people. Not all difficult children have had appropriate intervention. So if you have to deal with a seriously disturbed, sociopathic adult difficult child, think Ross Greene. Put everything you can in Basket C and walk away.

I think that's the biggest small town worry.

Apart from that, be yourself, be true to yourself and value your life and your family, just as they are. That's where I place my trust in others around me that they will respect my honesty about our family's needs. And you're right, Isla, that when we do this we also help raise awareness, making the village a better place to raise our child. But before we can do this, those of us who have been burned have to learn who we can trust. If I ask for sympathy for a broken leg, I will get much more than if I ask for understanding because I have a brain injury. People can see the broken leg; there is a time limit on the disability (so they don't have to commit to long-term sympathy, they will be able to move on) but the brain injury is unknown, uncertain and could suck them in to more commitment than they feel they can afford to give, considering their own personal and family needs. People will avoid committing to support if it looks like being an indefinitely long period of time.

As I said before, it's natural. We take on what we feel a personal connection to, and we walk away from what we can't handle. If we didn't, we would go crazy (or crazier!).

Marg

 

[TexasTornado]

Yes Marg-I learn soo much reading your posts-Thank you
Luvz,
Kathy

 

[Kjs]

We did not give out information regarding difficult child. We did hear the talking and see the glares come our way so many times. difficult child plays sports and is very good. Cannot handle losing. Very embarrassing if he misses a shot, or strikes out.

This year, I spoke to the coach regarding difficult child's diagnosis. This man is the best coach ever. He doesn't say a word to difficult child. Just has him take a seat, and puts someone else in for a little while. After difficult child gets through his little episode, coach puts him back in. No confrontation, no exchange of words, works great. Still hear parents make comments, but don't feel the need to address them. We ignore difficult child when he acts like this, as he is always looking over at us. We just continue to cheer on the others on the team.

 

[everywoman]

in my humble opinion honesty is the best policy. I, too, live in a small town. I have been a teacher for 20 years. My husband runs a successful business. My family and his family have been involved in politics, business, and community affairs for at least 100 years. There comes a point where hiding the issues your family faces will get to be too much. To me, ignorance lives in secrets and lies. I tell the truth, often. I work to educate people about mental health, drug addiction, and the life they bring about. Being honest with myself helped. I had to admit that nothing I had done as a parent could/would have changed what happened.

 

[On_Call]

I thought of something last night while I laid there unable to go to sleep! (GRR!)

For the most part, anyone who we have told anything about difficult child has been supportive. difficult child's karate Master has been amazing - as has his violin/orchestra teacher. They have gone out of their way - above and beyond - to acccomodate difficult child and help him succeed. If I had not told them what was going on in our lives, they would not have known - and I'm sure the outcome would not have been the same, as difficult child is often disruptive, etc. - not the usual actions that prompt accomodtion from staff or coaches and the like. We have been extremely fortunate on that account.

I have had the blank stares from parents - and some unusual questions, etc., but I remind myself consistently that I too would be unaware of the details and knowledge of what goes on with a difficult child if we had not been blessed with one. I think in some ways it has been a good thing to be able to show some people that you can be a typical family with difficult child-ness thrown in. Most people end up amazed that we go on about our business the best we can - and they end up rooting for difficult child.

Continued good thoughts coming your way.

 

[Fran]

<span style='font-size: 11pt'>Explanations can be too little and lead to imaginative stories or too much which invades difficult child's and your families privacy.
I am also moving into a smaller community in the next 2 months. I have learned from experience that you aren't kidding anyone by fanciful stories.
Those who are aware know your daughter(as well as some other teens) have struggles outside the realm of typical teen.
Keep it short and protect your daughters privacy. We say out difficult child has some learning challenges. Your daughter is going through some emotional challenges but is doing better.

Now at 22 we jokingly say to those who know difficult child well that "difficult child is still finding himself". They know what we mean.
I also learned that almost no one is not touched by some form of emotional disorder, drug and alcohol abuse or something else they want to keep under cover.
If you feel the person who is asking is just being a nosy gossip, I wouldn't have any problem giving the icy silence. I share with those who are sincerely interested or curious. Spare the graphic details. You owe no one an explanation or a confession. Your first and most important job is to protect your children and family from unnecessary pain.

Remember you answer to no one but yourself, your God and maybe your husband. Everyone else including extended family are a far distant priority. Hang in there. </span>

 

[crazymama30]

I vote for the neurochemical disorder. I was too open with difficult child's diagnosis at times. My dtr and friend rode their bikes past the busdrivers house, and he made some comment about difficult child being crazy. Now I talk in circles, so people know there is something wrong but cannot get the idea of "crazy."

 

[ShakespeareMamaX]

Hello!

Curious... Have you asked your daughter what she thinks about "releasing the info"?

When I was your daughter's age, I didn't really mind what people knew about my DXs. It helped having an "excuse" for the bandages over my arms. &lt;:/ Most kids were supportive. Adults, too, now that I think about it.

The difference is, my parents kinda were the blame. :frown: But that's story for another day.

Anyway, the worst they can do are be jerks...but that's their problem, right?

Don't wear a sign about her, but don't be ashamed to discuss her with those you feel you'd like/need to discuss her with. Brush off the ignorant and embrace the understanding (or WILLING to understand).

Maybe I'm a fool... I'm just putting myself in her place, I suppose.

Good luck with whatever you choose to do. &lt;

&lt;3

 

[OpenWindow]

I moved to a small town last year and kept mostly quiet with my neighbors. I told easy child's best friend's mom right away, because she was a Special Education teacher and I knew she would understand. And because difficult child spent a lot of time at her house.

We didn't tell our close neighbors until difficult child had a week of incident after incident on our street. We told the 4 neighbors who were involved in the incidents, and the local police who were called. I didn't tell them a specific diagnosis, because difficult child doesn't have one really, but that he was being evaluated this summer and we were addressing his issues. Out of the 4 neighbors, I was well received by all but I am sure one of them didn't really accept the explanation. Since then my stress level is down and the neighbors have been much more open and accepting of difficult child. Of course the length and depth of the conversations were different depending on the acceptance level of the neighbors I was talking to. With the one neighbor I didn't go into much detail - just told them he had behavioral issues and was being evaluated by a doctor, goes to social skills therapy and gets help at school. No further because I knew it would do no good.

I also tell difficult child's coaches before problems arise, because I know they will.

Linda

 

[WNC Gal]

Thank you all for your words of wisdom and insight... it is heartening to know that so many other parents are in small towns too...

About my daughter's wishes: it varies - sometimes she insists that we tell her friends, coaches, teachers, etc. that she is away at a new "private school". But when she has returned home from the phospital, she told many friends all about it. Also, when she was self-injuring last fall, she made no attempt to hide her scars -even flaunted them. I think it has more to do with attention-seeking (for manipulative purposes) than being comfortable with her "diagnosis" - which we are still unsure of.

I think I will try out the neurochemical disorder or metabolic disorder explanation in the future. If they ask for more details, I can truthfully tell them her doctor is ordering an MRI and other testing and trying to determine the cause of her symptoms and that we really don't have a definitive diagnosis yet.

The main issues that I will try to avoid discussing are the suicidality and "mentally ill" which is VERY frightening to parents without difficult children. I'm becoming less worried about the medications - as you all pointed out, many kids take medications for ADHD, and more and more for depression, etc.

Now to figure out explaining WHERE she is. I know the response I will get if I disclose that she is at a locked psychiatric hospital (PRTF)

A specialty school to address her medical needs....
A private year round boarding school....
A long term care hospital while she is stabilized
A year round school out of town
An academic program to address her emotional challenges...

What do you think?

 

[ShakespeareMamaX]

I'm going to go with "A year round school out of town" if you're trying to not leave people too much room to use their imaginations. Only thing is, be prepared to answer the "why"s you'll get when you tell them.

I'm sorry people are so ignorant to not just understand and be on their way. You really shouldn't even have to go through this.

Good luck. I'll be thinking of you. &lt;:}

 

[On_Call]

We have said that difficult child is in a school program in XCity. Period.

However, if someone asks difficult child directly, he either tells them exactly where he's been or tells them that it's none of their business. Either way, not great.