Deciding whom and how much to tell

[TerryJ2]

I've seen similar notes but after a brief search, couldn't find them ... I am in a position where I am planning to tell family members (sisters, etc.) that difficult child is high functioning Aspie. As he gets older, people are noticing he's a bit different. When he was little, they wrote it off to his being a boy. You know how that goes.

Okay, I have to back up.

I haven't even told difficult child yet.

husband asked me why we should tell him. Say what? It's his life and he needs to know what's going on. He's not stupid. Am I supposed to wait until I'm on my deathbed and difficult child finds boxes of testing and medication repts and papers about himself and flips his lid?

I was hoping that the psychiatrist would tell him last night (he respects authority figures--one of our problems is that he will shout in our faces that he's "fine" and we're lying--we've been through this many times with-other issues) but he refused to get out of the car so I sat through the appointment alone. She talked about SSRIs and how he needs Prozac or Zoloft for depression and anxiety fallout from not fitting in (she read the report) but you know what? She hasn't met him yet. I think she's putting the cart b4 the horse.

She said since he's comfortable with-our regular therapist, he should be the one to tell difficult child.

That makes her just a drug pusher, but if she's okay with-that, then she can coordinate the medications and I will just lower my expectations of her. (I did not have the Zoloft scrip filled. We're thinking about it. Even difficult child says he's being overmedicated. )

So, onto the family.
I really liked Fran's post, informing people about what sorts of supports and attitudes and environmnetns our g'sfg need during the holidays, and I would not expect everyone in my family to read that, but am considering lifting a cpl things from it for clarification.

Last night, one of my sisters called while we were out to dinner. We had gone out for difficult child's birthday, but he had a stomache ache, so easy child brought him home early. He took the call but didn't give me the msg. I told my sister that I saw her # on the Caller ID (long distance) so called her back. She laughed and said she thought difficult child had told me and maybe next time she should be more specific. Uh, yeah.
She is very sarcastic and tends to make things into a joke so unless I explain this in detail, she will tend to minimize it and then when difficult child is 18, she will suddenly wonder why he is acting odd.

One sister already knows and she's good with-it.
My s-i-l actually came up with-the idea to have difficult child tested so I'm probably going to tell her; she's pretty good about that sort of thing.

I want to do this to make it easier for people to interact. I do not want to invade difficult child's privacy.

Ideas?

 

[Jena]

Hi,

I know, it can be confusing this issue. I have yet to tell my difficult child what is going on with-her. She knows the obvious anxiety issue, yet we haven't truly gotten into the entire diagnosis and fact her brain functions differently than others.

I also think it's different for everyone. He is only 11, or 12? right? I think that the pyschdoc stating that the regular therapist should be the one with-you to explain difficult child's diagnosis is understandable. Also, in my own opinion it takes time to be able to explain the complexity of our difficult child's diagnosis to them. It may take years. Different levels of exceptance and feeding them info on small doses. First with difficult child it was well your having a rough time so we're going to go to .....doctors to learn how to help you, than it was we're going to take this medication to help you and enable you to be more comfortable. I just keep giving it in small doses lately. I think it's a gradual thing, especially when their younger. Your's may be ready to hear it soon.

As far as the family is concerned. Maybe what you could do is tell them, and than have some info that you can provide them with. What I have learned as far as my experience with family is you can't control people's reactions, or how they handle it. You can only do your best to provide them with info regarding it, and than they can further research if they'd like.

It's up to you and husband primarily to make your holidays however is best for all of you. This I've learned and am still learning. If they want to jump on board and help in making things either more structured, etc. than great, yet if they don't that's ok too.

Sorry, i'm typing this as difficult child is driving me nuts, she's home today long story. lol.

I still have issues with my family and they have been on board since day one of testing which was years ago. It takes a while and expect some level of denial going in, this way you won't be upset. If they accpet your words and dont' drive you crazy than you'll be pleasantly surprised.

good luck

 

[TerryJ2]

Good points, Jennifer. Thank you!

I like the idea to give it to him in bite sized pcs, according to what he can understand. Sort of like Sex Ed.

I also appreciate your reminder that family members will offer some form of denial. Sigh.

I hope your difficult child calms down and lets you get some work done today.

 

[Jena]

Terry

I hope i was of some help, i'm just winging it also. Yes, like sex ed lol. Give it to them in small doses on a "need to know basis" lol.

I provided my family with-info from nami regarding difficult child's adhd, Obsessive Compulsive Disorder (OCD), depression, bipolar, etc. they put it in their office and continue to call me. OMG!! So I finally planted them and said enough already, i'm not an 800 service i appreicate your wanting to know, yet my life is busy and although i love all of you go read the stuff!!!

Also we get caught into situations with family where they dont' handle difficult child the right way or do what i'd like to see done in certain circumstances. I let some of it go, because i want her to get the life is not going to kit glove her yet other stuff i call them on it bigtime now. Thanksgiving was one of them. I just kinda pick and chose my battles with them as well.

ahhh the fun of it all!!!!

 

[lillians]

our 2 both are aware that they are somewhat different,, older one for sure knows and says aloiud to all who are affected girlfriends ,class mates,, i am sorry but i have tourettes and sometimes i am a bit disruptive,,i dont mean to be,, voila its over and all are well,he also knows hpow he got that way,, younger how ever doesnt have a full capacity to 8understand whjat yu are actually telling her so much isnt said,but she says i a dumb i am in the dummy class ,, mommy when will i get smart.. even for being adopted doesnt seem appropriate to tell her something more to sort out that wont work in her mind., but she sure hates herslf at times,, what do yu say to her ,, with Fetal Alcohol Syndrome (FAS),, sometimes it all just gets lost in a jumble someplace,,

 

[luvmyottb]

Terry,

It is a difficult situation, but we have opted for being upfront with difficult child, family and friends. Everyone who observes her knows she is "different". Most people are charmed by her outgoing behavior and she loves people. But if you spend any time with her at all, you realize she oversteps boundaries, has a low frustration for anger and she will be socially inappropriate at times.

She knows she is adopted and knows she has ADHD. We don't know if she is possibly biopolar, so we haven't shared this yet. She knows her brain is wired differently and we talk about it. We have taken the approach it takes a village to raise a difficult child, so we inform as many as we can with those who need the information. Obviously, I don't tell all her details, but only as it applies to the situation.

When cheerleading this fall, I told the coach she has ADHD and may be hard to contain and focus sometimes. Or she will get over excited. I am sure you get the drift. I tell all her teachers, coaches and some of her friends too. My family and husband family have all been supportive and know how our road has been really difficult at times. She has pulled some c### with both families, but is no harm, no foul because they know she has issues and is forgiven. They want to help. For us, it's been a very positive thing to do. They know we sit in psychiatric, therapist, medical and school offices trying to help our difficult child as much as possible.

Your difficult child knows he's different. However you can phrase it to his level could be a good thing and he may have some relief to know it has a name. Good luck to whatever you decide to do. It's the only way I could cope. Not to mention the looks and whispers you get about your difficult child behavior behind your back-they realize now we aren't sh#### parents.

 

[JLady]

We are just getting started with all of this and it is a shock when someone first tells you there is something wrong with your child. Even if you already knew "something" isn't quite right. Everything I read about what to tell the child said that honesty is the best policy. So we openly discuss my son's issues. A lot like you said about we are going to try to get you some help and some medicine to help you do better.

My son is only 7 but he really does understand a lot. He makes comments like my medicine makes me feel better. When I ask how, he can't tell me but something must be different. I showed him a book that had a picture of a healthy brain and of a brain with damage.... explained how the medicine helps the imbalance and helps the brain to heal. He's a really bright kid and he grasped on to this right away. To him, this medicine helps his brain so he can be good. He's young enough that it doesn't bother him.

As far as family goes, that is a whole battle in itself. No one in the family seems to understand anything and I kind of wish I hadn't told them anything. My mom says he's just a boy. My dad says he needs discipline. My dad lives with us but doesn't seem to have noticed the last 3 years of punshment that hasn't done any good at all. Honestly, the family seems to make it harder.

Good luck. It's hard to know what to do with any of this stuff. I do like the honesty is the best policy though.

 

[Mayapple5]

I took difficult child to a new dentist last week and informed then that she is Autism Spectrum Disorders (ASD)/ADHD. I went to him today, he said he would have had no idea she had any problem if I hadn't told him. She was the perfect patient! Yes, she can be "normal", most people tell me she is just a normal five year old, I really get so tired of that phrase. If people could see her in the afternoons, especially on days when she decides she doesn't need a nap or rest time. Those are the evenings she is uncontrolable (or is it just me?) I tell my husband either she goes on medications or I'm goin on medications! I swear there are days I need to be locked up! Oh, I do so love her, she is adorable, The house is a mess, I have the holidays to get ready for, but you know what? It's not going to get ready, I have her home, like most of you do, for two weeks and what ever happens with this house, while we play and I pay all my attention to her those two weeks then so be it! Because if I take time for anything/anyone else, neither she nor I will be OK in the end! Oh, husband will be taking a week off during the holidays, but his days are spoken for for him! that's his time! Let's see how often can I call our respite worker?

I know I sound like I'm complaining, but I'm tired. And it's not summer yet... well I do look forward to summer, we can get outside and go to the parks and get back to riding horses once a week and a lot of other activities we can't do in the winter. I'm just not an outdoors/cold weather person and she seems to get sick so easily when it's cold out. She's just getting over walking pneumonia.

My family knows her diagnosis, most deal with it. My dad gets her all excited and then hands her back to me and tries to get me to get her to settle down. His house is more of a museum than a home and I have to stay on top of her to keep her hands off things, we don't visit often for that reason. My sister understands but we also don't visit her often either, their homes just aren't kid proof any more especially for a child who likes to touch and feel every thing and investigate things. Oh, but she is just a normal kid who had a natural curiosity. GRR! NO she takes things apart, she picks things up and breaks them. she tastes everything! She's not a "normal" five year old! But who listens?

 

[SearchingForRainbows]

Terri,

I love Jennifer's advice about giving him info in small doses - Just like sex ed, lol!!! I also believe that honesty is the best policy. I never hid anything from my difficult children. I just tried to make the info understandable for their social levels (not chronological age.) And, I didn't blast them with it all at once.

difficult child 1 never believed he had any psychological problems until he spent a week in a pysch hospital and three weeks in a psychiatric outpatient unit (He slept at home.) As an inpatient, he had a fantastic psychiatric who finally made him begin to understand his condition. It still took awhile before it fully sunk in. Now, almost 18, he fully understands his diagnoses.

I'm not sure if difficult child 2 will ever fully "get it." However, we try to make him understand on his own social, emotional level that he has some issues, and this is why he is on an IEP, sees a therapist, etc...

Most importantly, we tell both difficult children that having a disability does not mean you can use it as an excuse for not doing things. While difficult child 2 does not fully understand his disabilities, he still tries to use them as an excuse to get out of things he doesn't want to do - i.e. making his bed, cleaning up his room, etc...

As far is family is concerned, I'm a bad one to offer advice. husband's family chose to ignore that two of their grandsons have problems. With the exception of one of husband's sisters, no one wanted to help us, not even offer to babysit for an hour, when they were young. I no longer have any contact with my parents, but, when I did, they were in denial. I think they were embarrassed having grandchildren who were less than perfect.

I've sort of lost my train of thought - difficult child 2 has been in a "melt-down" for the last half hour. I hope I made a bit of sense. WFEN