Do you tell friends, family & aquaintances?

[halana75]

About your children's disorders? I've of course shared with close family over the years but don't generally tell others unless they inquire about why my child is doing something or in regards to my own reaction towards the behavior my child is having.
I think most people don't have a clue as to what I deal with daily.
How do you approach that?

 

[AnnieO]

It depends on who it is.

As I am a stepmom, I have to be really careful with this. Of course the schools know. And my parents as they see the kids as their own grandchildren. husband's parents don't know the whole story, their behavior in their divorce and even now is so like the kids' biomother's behavior that they just say either 1) it's BM's fault or 2) the kids need to "grow up".

Now my friends... One of them knows almost everything - she's my best friend though. No one else knows much at all. Except here, because everyone here gets it. And, well, I'm mostly anonymous.

One of husband's friends knows a lot because he lived with us for almost 5 months. But still not everything.

Others - like the parents at football, for instance - know that there are issues with BM. She will tell them anything she thinks will help her. But they see how she treats the kids and us at practices & games. So they chalk the problems up to conflict.

Not the whole story. But if it's someone who needs to know, yes. Otherwise - no.

 

[tiredmommy]

I'm pretty careful about disclosing Duckie's ODD. We're pretty fortunate that we can usually pass it off as her asthma & allergies affecting her temperament. Only a few good friends know and the cheerleading coach (she's discreet also).

 

[gcvmom]

It just depends on the situation, the people involved, etc. With close friends, I am very open about things, but only if they ask or seem interested. I think my mother is the one person in my life (aside from husband) who truly understands what I go through -- and that's probably because she is the only one who has been willing over the years to take care of the kids for extended periods of time. So she's lived it first hand, too.

Most people can never truly understand what our lives are like unless they have a difficult child at home, or a close family member who is one. You learn quickly whom among your friends and family fall into that category.

Some people just cannot deal with this kind of information, even if they are close to you. My in-laws are like that. They can't seem to get their heads around the concept of what's wrong with my difficult child's and that it's something they WON'T grow out of. I've learned not to go down that path with them, and I don't allow them to try to take care of the difficult child's on their own. It just gets ugly.

The fact that everyone HERE on this website "gets it" on so many different levels makes this a unique resource for support.

 

[jal]

Our parents (difficult child's grandparents) know. The school obviously knows and some people I work with know. The reason for that is that difficult child was hospitalized for 3 weeks last summer and I had running around to do. Also, people here can relate. One co-worker has a grandson that has Aspergers and he's a year younger than difficult child, one has a grown daughter who suffered with dyslexia growing up and people here can generally relate (in one way or another). Some of my close friends know, but my husband doesn't tell his friends, but his boss knows because so much time is taken from work to run around.

In the beginning I cared, but now I don't. I don't broadcast it, but those that need to know do.

This was one of the questions I posted when I first started on this site a few years ago. There truly is a process that we parents go through when we get a diagnosis or know something is not quite on the mark with our children.

 

[jbrain]

I'm pretty open--usually very matter-of-fact, not defensive or apologetic. If I feel like telling someone I do, otherwise I don't. The one thing I don't do is "own" my difficult children' problems and behavior. A few years ago a co-worker thought I was being too open about difficult child 1 and people might talk about me behind my back--I just didn't care if they did, why should I be ashamed? I guess if I am looking for support or someone to talk to who will understand then I know who those people are. I don't really care what acquaintances think.

Jane

 

[daralex]

I agree - I am also very open about difficult child and what she's dealing with. Most of the time I almost have to so I can "explain" why she acts the way she does. If people can't deal with it that's their problem not mine. I gather her teachers (when she was in public school) every year and sit them down to explain what they will be dealing with and why. It helped a little to have them on the same mental playing field. Of course - the only ones that ever helped were the ones that understood what it really was we are dealing with (far and few between)! I think the more people talk about this the less taboo it will be. Look at how many of us are on this board - there are more people dealing with situations like ours than you think. You'll never know if people in your daily life are dealing with the same things we are, but opening that door to dialogue is sometimes more therapeutic than you think it could ever be!
-Dara

 

[everywoman]

I tend to believe that a lot of misconceptions about mental illness and drug abuse is from the fact that people don't understand either and tend to believe they only happen to someone else. By being willing to discuss and explain the things that have happened with my difficult child and husband over the years, I hope that I have been able to open some eyes and dispel the myths that exists. With all the medication commercials these days, one "put-down" by the kids at my school is that the person must be bi-polar. Anytime I hear them say that, I make sure they understand what they are saying, and how it hurts me for them to think of bi-polar in that way. I give them the story of my family and the battle we've had. Today, one kids told me I was acting "bi-polar". I quickly set him straight, in a nice, informative talk. A 30 year old bi-polar difficult child who is a friend of the family died yesterday. He had been homeless, wandering around downtown, and begging for money for several months. His parents had done all they could to help. He apparently fell in the waterway (or jumped) and drowned. Today I used him as an example of extreme bi-polar behavior.

 

[helpangel]

Actually I'm pretty open about it, I feel an obligation to others especially if Angel is entering their homes that they know she has a tendency to pick up money - so to please keep it out of site and don't leave her alone with purses etc. Many times I've been alerted to situations by neighbors... her on neighbors roof, handing out $10 bills to the other kids, swinging her scooter at another child's head are a few that come to mind. When she has a screaming fit and runs out the door my neighbors are the ones usually telling the police or me where she is hiding or at least which direction she went, or they will check their yard, shed etc. and join the search when just can't find her. One of her favorite hiding spots is in the dog house of the big Rottweiler down the street that no one even the owner can believe that dog tolerates it but the dog guards her LOL. A few times when she has gotten really bad I've had to send the 12yo over to neighbors just to keep her safe. I've been in this house for 19 years and we are kind of a tight neighborhood so when you have the police & ambulances at your house it's just easier to tell them what's up rather then what the gossip mill comes up with. My neighbors have helped me a lot when CPS comes around investigating something too.

 

[Wiped Out]

I'm fairly open about difficult child's issues especially with family, close friends, and people I work with. difficult child is fairly out there and we often have appts. so it is easier to explain than have them wonder what is going on. I don't tell my mom much because she perseverates too much and I don't like to tell my dad's wife too much because I think she doesn't get it.

 

[judi]

When difficult child lived at home and was in school, the school knew of course, so did some neighbors because my son did some stupid things. After he moved out, I don't discuss it anymore with anyone.

husband and I sorta mourn our son as to what he could have been. Its not easy at all when they are adults (our son is almost 24).

 

[TerryJ2]

Hi Halana, nice to meet you.
My answer is, it depends...
upon who needs to know, when and why.
If my difficult child is doing something bizarre and out of place, I will say something.
I have not made a huge announcement to my family but I am going to have to, simply because one by one, I've told everyone but one sister, and she's going to find out and wonder why. (She makes a big deal out of everything and I just don't want to deal with-it right now.)
I try not to tell people from his school, except his teachers and principal, because I don't want him to be viewed as "different." Right now, he's a yr older and the kids think that's cool. I'd rather keep it that way as long as possible.
The teachers I have told, incl. church school, have all said, "Ahh," and raised their eyebrows. They all said, "I knew something was different but didn't know what it was." So far, so good.
Gosh, I'm no help at all, am I?

 

[Alttlgabby]

I am usually pretty open with people that I know. I have also found that when I am pretty open, it opens up a whole new conversation because the person I am speaking with either has a child with something similar or knows someone. It helps to talk about it with them and sometimes you can learn something from the conversation about possibly what someone has tried or done and it has helped their child/friend/etc....

 

[earthprowler]

It depends on what's happened, difficult child is hypersexual and has lost a couple of places to play because of talking such talk around the other kids. i've tried to explain to the parents and some of them eventually let him come back but others don't. family, no they just don't get it. they think if i just beat him more, he'll stop acting the way he does with the back talk, cussing, destruction. i think it's easier for people to believe this is an adult problem than a childs illness. at his old school i never had one teacher that wanted to learn anything about the bipolar or ODD, ADHD they got but obviously the rest was just too much to deal with. so usually i don't say anything unless it needs to be said, except for school.

 

[compassion]

I am finding I have to. When she was first hopitalized last summer, I wanted toprotect and go back to "normal" life. It did not happen. I have told some of her freinds now that she hasa been out of home sine Feb.3. I will continue to act as her advocate and adovocste for whast she needs. I look for dafe places. WE are transitioning now back home from hopital/Residential Treatment Center (RTC) in about a month. She has to have new freinds/situations. iw ill focus on her neeeds but never gian can I pretend she id typical teen (typical teen). We ar emeeting some new people via a Autism Spectrum Disorders (ASD) teen meet-up gorup this Sunday. I will focus on intersts and I am exctied for thsi op : other teens that also need lots of adult guidance. Her vollyball coach, right before she wen tin hopital, I daid frankly she is not OK. I donot plan to go into details but will advocate for what she needs: her endurnce is a lot less so wil communicate that. Her godmother doe snot know:actually I am leaving some of this u to my difficult child to share or not to sahre. She said she eants to wait until she is out to conenct with her for her birthday. We have not tald family. I think it is important Occupational Therapist (OT) have places that sare safe: and look to being open with therapists, support groups. WHen she has been having testing, Ihave shared the truth.
I am looking at what is the need, what are theintersts, what needs supporting. I am also seeing some situations that I trie dto have her in, like church group, are not appropriate at this point, plus her voice lessons, cutting those out. I am workignon having supportive peopel come to the home and will share a bit about what works, moslty coing typw stuff for dealing with Autism Spectrum Disorders (ASD). Compassion

 

[maril]

My mother's positive influence helped me when I became a mom, in that, since my kids were young, I have not approached their challenges as something to be ashamed of (e.g., my daughter struggles with weight as do I and my son struggles with attention deficit and had mountains to climb since nearly the day he started school); rather, I have tried to shift the mindset to what can we do to work on this, also, trying to consider their feelings and trying to not overwhelm them. In a perfect world, it would be great if other people felt this way but some do not, so I have also given my kids the message that they don't have to share their concerns about their challenges with others unless they feel comfortable doing so.

Like others, it has become necessary to let schools, professionals, and some family members, who are interested and have a role, know information about my son's challenges; for example, he is inpatient now, so he is absent from school and family functions -- have to explain to a certain extent what is going on, where he is. I have also discussed my son with adults I know fairly well, who are truly looking to offer support and are interested in my son's well being.

 

[DramaQueenLucy]

I am pretty open about who knows what about my kiddos but I don't broadcast it either. The school knows, my parents, my boss (because of days off etc) and a few close friends.

 

[Wonderful Family]

We typically tell people on an as needed basis; we don't broadcast it, but we don't hide it either. difficult child has told his couple of good friends that he has been in the hospital. He's still in a private school for the time being so not much of an issue there - they all knew when he was hospitalized last year too.

However, husband and I have found that if we are going to be doing something in which difficult child will be introduced to people in a new envrionment; and there is a good possibility he will be uncomfortable, we need to alert even strangers ahead of time. People enjoy meeting family members; and difficult child may or may not be in a good mood at the time.

I lost a dear mentor last year (someone who's played this role for 15 years) over difficult child and his behavior. Had I taken a risk and told him, and I know he would have understood, I wouldn't have lost the relationship.

 

[trinityroyal]

We tend to be much more open about difficult child's Autism Spectrum Disorders (ASD) than his othe diagnoses.
Around these parts, there is a big push on for supports for people on the spectrum, and people seem to have at least a basic awareness of the condition. Even if they don't know a lot they're willing to be supportive when they hear autism or Asperger's.

Frankly, difficult child's behaviour is so obviously atypical, and he's always accompanied by a 1:1 when he's out and about outside the Residential Treatment Center (RTC), that people sense that there's something different about him, even if they don't know exactly what it is. Letting people know about his Autism Spectrum Disorders (ASD) diagnosis seems to allay people's fears, provide a quick explanation for any odd behaviour and allow them to be a bit more comfortable around difficult child.

Now, the biploar diagnosis, we tend to keep quiet, except among very close family. Sadly, the stigma attached to bipolar seems to still be pretty high, and people have been far less understanding of difficult child when they have that information in their possession. I honestly don't see why it should make a difference to them. He's neurologically different no matter how you slice it, but I guess irrational fears are just that, irrational.

Trinity