Sharing diagnosis with ghg

[lovelyboy]

I'm a strong believer in sharing info with ghg that in my opinion is age appropriate...I feel if an AS kid knows what's going on he will gain more insight and not feel 'stupid' (my sons words) because he 'don't get' social cues or feels different...
My mom feels I'm doing the wrong thing because I'm empowering him to have info so he can 'act' the illness or manipulate us.
I told her that the worse thing for my ghg is to feel different or not fit in so he will do anything in his power not to act non neuro typical!!!
I know when he is manipulative.....this is very seldom. He would rather try and cover up his symptoms!
Any thoughts?

 

[buddy]

I am with you. In fact at the middle school and highschool levels there are usually disability trainings that the kids go thru here to learn about their challenges, what it makes difficult and what they can do. They learn about famous people who have similar issues for role models. I do think it is really hard that people often interpret their explanation of why they are struggling as an excuse after that. My son will say, I have special needs. People then say he thinks he can get away with things because of that. He has never gotten away with anything so that argument doesn't hold water. He says to me, that is how God made me dont they understand? and many other things like that. To him it is just fact not manipulation. I tell him over and over that he still has choices and he has to trust that people who are trying to help him are doing so because they understand about the tricky moments. have you ever seen the workbook for Autism...really most appropraite for Aspergers, you can eliminate the disabiity words and put any disability label in it but it is a great self-esteem workbook ...wait I am gonna look it up...
http://www.amazon.com/Aspergers-Wha...=sr_1_5?s=books&ie=UTF8&qid=1319705195&sr=1-5

I had a copy and loaned it out and never got it back. It is a workbook format and so good. You can pick and choose, copy it whatever to adapt it for a child. several parents I know who have it say it shouldn't have the label aspergers in the title because inside it says for Reactive Attachment Disorder (RAD), ADHD etc. And it really is...the focus is not on the word "aspergers" it is on strengths, weaknesses, coping, etc.
Not a direct answer to your question, but thought I'd share because it does help them deal with the diagnosis.

I think for kids to be able to respond back with an appropriate label and "defend" or explain when people say something insensitive, it is helpful too. Mostly it is about what you said. They dont have to wonder and have a reason for why they feel so different that is a legitimate thing. Has your mom ever had symptoms that people couldn't figure out? It is such a relief when you know there really IS something, you are not going crazy and it is not cancer or something really serious. I figure it is a similar experience that maybe she could relate to.

Even if she is right, and he uses it (esp. as a teen eventually) to try to manipulate...it is still better than having the fear, anxiety and poor self esteem that comes with not knowing.

Be prepared though, my son hit a phase this year where he HATES having autism. Is feeling like he is the only one. He asks everyone (gosh, he is in a room with mostly kids with autism) so once he gets into the wanting to fit in mode that all teens go thru it can be hard no matter what. building that self esteem now seems even more like a good idea. I wish I would have tried harder when he was younger to explain it.
has your son been diagnosed now? your signature says maybe. If he has Autism Spectrum Disorders (ASD), does he really have ODD? not doubting you at all...just wondering about it, mine can be oppositional and this week at the hospital. they said not ODD for sure, he is too compliant when all other things are going fine. they have so many ODD kids there they just feel there is a difference when the behavior can be explained by another diagnosis.

trust your mommy gut...you know what your son needs. Love that you brought this up.

 

[BusynMember]

I never lie to my kids. I mean never. If they can't trust me, we have no relationship. My son knew he was different. We just incorporated his Autism Spectrum Disorders (ASD) into his everyday life and he knows he has it and does not try to manipulate us with it at all. If any of us had a disabilitly, we would want to know what it was and how best to live with it...I feel my son is the same.

 

[buddy]

I do lie to Quin. I dont tell lies to hurt him but for example he couldn't sleep because it takes him so long to adjust to a new place and he just can't shake his worries. He wiil ask if there are bad guys in our city. I tell him no. Yet, he knows that there are police and He still believes in Santa, Tooth Fairy (though no more teeth to lose) and Easter Bunny. I am sure kids have told him the truth but he never says anything and he will say (if I have said no to something/everything in a store) can I add it to my list for Santa? I always say yes (he is also told Santa knows what is best for him) i can even say out loud, wow, I will have to tell santa you are doing so great etc. he will ask me to say things out loud to make sure Santa hears. I admit we have conflicts over this and there is no easy answer...he will doubt me sometimes because I will say maybe when the answer is for sure no...but maybe puts off a blow up until a safe place where i can handle it, or sometimes it just buys him time to be able to get into that head space so it is not all of a sudden a change of what HIS plan was. now that I am typing, I really lie toi him a lot. I tell him a different name if I am on the phone and I know he will go crazy if I tell who it is (like his teacher), I deny that there is a get together at my sisters if he is in a bad place and I just dont want to deal with the potential problems. If I said, yes, they are having dinner all together and you can't go because your behavior is not in control today he would panic and throw stuff etc. I dont feel badly about lying. But it doesn't always pay off and probably adds to his insecurity at times as he is learning/maturing and able to figure out some lies. I admit I probably shouldn't at times. It is often for my convenience and to prevent his going thru something.

 

[lovelyboy]

Thanx Buddy for reminding me to change my siggie! I totally forgot!
Yes....I'm so greratfull to our psychiatrist, who after the 3rd session already said that she thinks he is on the spectrum.....! High functioning, mostly AS!
Since then our lives changed! I can't be more greatfull for knowing, because ODD must be handled firmly with strong bounderies and consiquences, but since we now know to search for stuff that CAUSES misbehaviour, like misinterpreting facial or verbal messages, changing environment to fast, exct, our lives have changed for the good! We are almost 4 months meltdown free!
Also the medications kicked in and since the dosage were doubled the 'black' obsessive thoughts is almost gone! Again the psychiatrist was clever enough to identify that this thoughts could be a compulsion and part of Obsessive Compulsive Disorder (OCD). Now I just want to sort out the possible TLE!
I saw that the more I discuss the symptoms of AS the more my son started opening up about things he experience! In the past he thought that how he experience things, like people getting smaller, was normal, like it's suppose to be that way!...So this also helps me get closer to the diagnosis!
I don't think it makes big difference if he uses it to manipulate or not....either way, he will still need to take responsibillity for the consequenses of his behaviour.....

 

[Malika]

I think this is a genuine dilemma. How much to share with a child about their differences? And, by extension, is it right to "lie"? I've never spoken to my son about his being different from other children in the sense of him having a "condition" that makes things not his fault (even though that is true, often). Once or twice I've talked about hyperactivity but I don't think it's registered. We have a book called "Zak has ADHD" that I actually don't like reading him any more because J started doing the things in it that the hyperactive zebra does before he gets therapy and medication - like calling people fat, which he had never done before I wonder to what degree it is frightening to a child to be told that they "have" something that makes them not in control of themselves, as though they are somehow divided against themselves? I once looked after an elderly lady who had Alzheimer's. She would have these terrible moments in which she had a kind of semi-lucidity about what was happening and she would cry out in anguish, again and again: "there's something wrong with my brain, there's something wrong with my brain"...
So I genuinely don't know the answer to this. I don't want J to feel different and he doesn't want to feel different (even though in some ways he clearly is). I don't want him to start thinking about himself as "sick" in someway. My instinctive preference is to downplay the label - just talking about his difficulty with frustration, anger, etc. At the same time, I really do not like lying to him. Most people disagree with me about this but I have always told him that Father Christmas is a nice story made up for children. Probably largely because Christmas is no big deal for me/us, and we are usually in Muslim Morocco for it... But also because it isn't true and I don't agree with pretending that something isn't real is... At the same time, I take him to Koranic/Arabic class on Sunday because it is part of his cultural heritage and I think it is good to grow up with a core of moral values (from any religion), even though I don't share this way of looking at the world, so... contradictions are rife. He asks occasionally about God and I tell him that God is all of life and it is love, which seems acceptably true to me... and not in contradiction with anything any religion would teach (I hope).
But a lot of this is related to age... your son is older, lovelyboy, which changes things also.

 

[lovelyboy]

Malika...I hear what you say, but if you don't mind I still would like to share this next info with you? I got a great book for my son, called All cats have Aspergers, but I saw you also get a book with big pictures on each page with the tittle, "All dogs have ADHD"...just looked nice...my boy actually just look at the pics...sometimes read the one sentence on the bottom...don't know how much he identifies with but it's a nice way of faccilitating communication.....

 

[keista]

I shared son's diagnosis with him when he was about 13. Until then, I said things like he was "different" or thought and processed information differently than *regular* ppl. When I finally told him the actual diagnosis, he did go through a mourning phase, but then was quickly empowered. He realized that the diagnosis did not change him, he was the same as he always had been, but he now had a name for why he was different. He was pleasantly surprised to find out that his friends (online) "got it" and were more than happy to accept the diagnosis as an explanation for his often odd way of communicating.

Sounds like your mom is not 100% on board in believing he actually has this condition. Wonder if he broke his leg, if she would consider NOT telling him that his leg was broken. After all, "MOM! Can you get me the remote? I can't move, my leg is broken!" is certainly manipulative, and if you don't tell the kid his leg is broken, he'll get the remote himself. Laughable, isn't it? in my opinion his diagnosis is not much different. I find such analogies very useful in making things clearer for ourselves as well as those around us who just don't "get it". They won't necessarily understand fully, but it does make them pause and THINK about it.

 

[Malika]

lovelyboy, thanks for the suggestion. Believe it or not, there is actually a youtube video of someone reading this book so I have now "read" it I think it would be an excellent book to share with a child who has been diagnosed ADHD and who knows they have this label and would provide lots of food for discussion between parent and child... Also very positive, of course, and would help boost the ADHD's child self-image. Also when things are true and they are stated, there is a kind of liberation in that - so it could be helpful to have these things outlined.
keista, I do understand the point you make. For me, the analogy between a broken leg and a mental/behavioural issue is not a perfect one. Basically because the broken leg is visible and unarguable. Unfortunately we none of us know exactly how much a child is being manipulative or truly cannot help themselves, etc. There is more ambiguity and more room for interpretation than with a physical disability. To state the obvious...

 

[keista]

There is more ambiguity and more room for interpretation than with a physical disability.

Only if you do not understand the disability or your child. I find absolutely nothing ambiguos about my son's inability to socialize "normally" and his resulting refusal to do work in groups in the classroom. There is nothing ambiguous about DD1's inability to tolerate noisy situations or her resulting, sometimes maladaptive, behavior to get away from such situations. Absolutely nothing ambiguous about DD2's friend (ADHD) calling our house repeatedly after she was told DD1 was busy and would call back in 1/2 an hour.

Once you have the correct diagnosis and understand how it impacts a particular child, there is very little ambiguity. I will concede that some ambiguity/confusion/"don't know how to deal with this behavior" can pop up, but that's normal even with PCs.

 

[InsaneCdn]

We always shared the diagnosis... IF we felt it was accurate. Sometimes, the diagnosis doesn't seem to fit - we didn't share those, but rather the specific traits that were being noticed (social skills, for example).

In sharing the diagnosis, we've been fortunate enough to be dealing with ones where there is a positive side as well as a down-side. We talk about all sides of these... and about where extra effort is required, and where accommodations can help and why, and so on.

We found this a great tool in combatting the anxiety and depression that so often come as secondary dxes due to the stress and strain of not understanding themselves and not being heard/understood/validated in real life.

 

[ready2run]

i didn't read all the posts so i may be repeating what other people said but.......

i was open with my kids the whole time during their diagnosis process. i told them that the doctors were just checking them out because they might have a different way of thinking from some other people. i never made it out to be a bad thing. i never gave them any list of symptoms they could use to fake it or anything like that either. they know that sometimes it's harder for them and they struggle with things that look easy to everyone else because they are thinking differently, not because they are stupid or wrong. i always told them it was okay to 'think different' because it makes them special and it helps them with some things that are hard for other kids even if it makes other things harder for them.

 

[Malika]

I think that's great advice, ready2run. In my own case, my son would not understand if I explained that to him - not sure whether that's because of his age or because he thinks differently...
Sure, keista, I respect your point of view and understand you have this clarity about your children. I hope one day I have the same clarity about what is going on for my son.

 

[buddy]

Everyone has such great points. Really making me think. bottom line to me is that this all reinforces that it is a beautiful thing that each of us knows our own kids and what they need. Sharing these ideas helps me really sort thru what I have chosen and think about what could happen in future.
I too tell my son it is just a different way of thinking and that everybody has something to deal with. (he always likes to be INCLUDED so that really made a difference to him). I also found that the "illness" thing for him was very real at one point, and he feared it-- and I didn't realize it. He finally asked if it was like ALS???? I am sure the Autism Spectrum Disorders (ASD) thing had been tossed around in the classroom and wherever. I usually say autism. So we talked a lot about that (he is really into lou gerhig). He seems ok with that concept now but I wont take it for granted. As for Santa, he would be totally left out of our family culture etc. But one of my best friends is Muslim and she had been raised Christian. They don't celebrate Christmas but they do celebrate X-mas if that makes sense. They do it like a national holiday. two of her three are Autism Spectrum Disorders (ASD) too.

In the end, I stick to my motto: MONITOR AND ADJUST

Another difficult child funny....he has heard me say so many times at the counter in dr. offices and at the pharmacy that he "has straight M.A." (for insurance) that he has started telling people at school and I have heard him say it outside too.... "I have straight m.a." Like it is a diagnosis. He does say it to his teacher like she should let him off the hook sometimes. Never happens though, smile.

 

[hearts and roses]

I think that by sharing what you know and have experienced [concerning his diagnosis] with your son, you are helping him to develop skills so that one day he may advocate for himself. That was one of my goals in sharing information with my difficult child. Yes, she did use her knowledge in her teen years to manipulate, however, in the long run, knowing has helped her in many ways. I wouldn't EVER withhold information that may help our children.

You are right to give him age appropriate information. Just do so with both eyes wide open and do not overwhelm him; it sounds like you have a very good handle on things. Concerning our parents/inlaws and wellmeaning family members who give us their opinion - my feeling has always been they had their chance, now it's our turn.

 

[InsaneCdn]

Malika - you explained your self quite well... its hard to share this stuff with difficult child until you actually know what is going on. Getting answers is the toughest part... knowing how and when to share with difficult child is easy in comparison!

 

[BusynMember]

My son is not mentally disabled, as far as mentally slow. He always knew he was different. He seems to feel comforted knowing why. I know that as a child I felt very different. I was moody, quick to cry, quick to throw a tantrum, was ridiculed by other kids, had no frineds...by age six I remember thinking, "I'm different. WHY am I different?" I did not verbalize this to my parents. By age thirteen I was looking in encyclopedias (remember them????) trying to find out which mental illness I had. This was all without anybody telling me anything was wrong with me. Since nobody ever talked to me about it (acknowledged it), I grew even more afraid and diganosed myself...first after I watched "The Three Faces of Eve" I spent years thinking I had a mulitiple personality because I was forgetful and spaced out. It positively interfered with every aspect of my life. I expected myself to skip three yars and to just wake up one day, like Eve did. Later on, I was convinced I had schizophrenia and would lose 100% touch with reality. Because nobody discussed it back then or talked to me about it, I just got worse and my anxiety flew off the charts, wondering what was wrong with me. It had never been a secret, in my mind, that I was, in my way of thinking, "crazy." When I did not do well in school, I wasn't told I had Learning Disability (LD)'s, I was told and believed that I was lazy and stupid and bad...I thought it was all a part of my being crazy/schizophrenic as I'd read that schizoprenia can make one cognitively dull. I also could not pay attention, which made me wonder if my other personality had taken over...lol. I was really a mess as a kid. I had no real childhood.

Our kids know they get into trouble more than other kids. They see other kids and notice how they can control their impulses and tempers. They hear other mothers saying "no" and notice that other kids can accept it. They feel themselves losing control or obsessing with objects or being unable to reach out to other kids normally and they hear the taunting and the names and it is hard for me, as an old difficult child, to believe they don't realize that they are different. Furthermore, although not all kids are the same, I think most kids feel more comforted once they know why. That is why I never lie to my kids and don't hold things back. It has never made Sonic any worse to be non-chalantly told what is going on with him or why he has trouble in certain areas.

One day, after I had thought Sonic didn't really "get" autism, he came downstairs with a smile on his face and said, "Hey, Mom, they have this really neat show on the radio about high functioning autism and kids are on and everything. That's like me, right?" He didn't sound disturbed at all. More like "Yay! They're like ME!"

We do not do the denial thing nor do we think hiding what he has will make him more normal. He has evolved 80% to normal anyway, but there is still that 20%. He is comfortable with both kind "typical" kids and "different" kids he meets in the Special Olympics. For those of you who are afraid to try the Special Olympics, or think it is only for slow kids or kids who have Downs Syndrome, I can not tell you how much good it does for the participants. My son SHINES there, is uncharacteristically social, and loves to compete. Some kids are obviously very different, but most are just like other kids, although you know they are in some way disabled. They bowl like champs. Sonic just won a big award last week...his average for three games was 154. That's a "typical" score...he can bowl with anyone.

Sorry that I got off on a tangent. in my opinion only, and I'm certainly no expert, the more you hide, the more ashamed the child is...or the more worried and scared or all three. You can not imagine what goes on in a little mind when the child is certain something is wrong, but he has no idea what. Very often, his conclusions are not good. Often he/she not only comes up with his own diagnosis, but he thinks "I am a bad boy" "I am a bad girl." To a child, since our kids get into trouble so often and other kids don't, that is very common for them to think this. I thought it all the time. As a teen, it made me suicidal. I am perhaps one of the few who had serious mental health issues as a child so just sharing my story. I hope that your children do not waste the only childhood they will ever have worrying about what is wrong with them...or even thinking about suicide. Often kids do not express how they really feel. They either can't or are afraid.

OK, I am stepping off the soap box...lol.

 

[DammitJanet]

I didnt completely read MWM but I think we are somewhat alike on this. My kids have always known what is going on. How could they not? They were so obvious in their behaviors. Back when they were growing up not that many kids were taking medications and the teachers actually kept their medications in the teachers desks so they would announce at lunch time "Jamie, Cory come take your ritalin!" I felt it best they know why they were taking it.

Back when they were in early elementary school I explained it to them that they had something in their brains that made them much more active and made it harder to pay attention to the teacher but that the "wiggle pills" helped them with that and if they would also work hard, they could overcome this problem. I also told that because of this issue that made them more active it made them more able to run faster and play harder outside like they liked to do. So in that fashion they were luckier than lots of kids who wanted to just sit inside. They really liked that! Of course that meant I had to live up to my commitment to keep them in sports all year long...lol.

When Cory ended up with the bipolar diagnosis, he and I learned all about that. We read up on all the medications he was put on and all the side effects. He impressed many a doctor with his knowledge. He has never hid his diagnosis's from anyone and accepts himself completely. All my kids do. Our issues are just who we are. They make us unique.

Now as far as the supposed lying about Santa, Easter Bunny, Tooth Fairy. I dont consider that lying. I always told my boys that if they ever told me they stopped believing in Santa that Santa would stop coming. Same for the rest of them. I guess the tooth fairy did quit but the rest havent...lol. Well...Cory did tell me when Keyana was born that he guessed it was time for him to become Santa now but he wouldnt mind if he could still believe too...lmao.

 

[BusynMember]

I don't see the Easter Bunny or Santa as the same at all. These are fantasies that kids believe for a while.

A diagnosis is who the child is. I dont mean I didn't let them believe in Santa...I did! But no secrets regarding them or me. The oldest kids know almost everything about me and the younger ones know as much as they can handle. That's how we do things here.

 

[buddy]

Now as far as the supposed lying about Santa, Easter Bunny, Tooth Fairy. I dont consider that lying. I always told my boys that if they ever told me they stopped believing in Santa that Santa would stop coming.

My best friend does that too and his youngest is in college! So cute. I think my difficult child still likes this stuff so until he seems not to or asks me I will just lt it go. I dont think it is lying either. There was a whole Everybody Loves Raymond show on this...I think lots of people can relate.

When I was growing up my third sister didn't have any of that fantasy except for Santa. When she lost her first tooth she panicked. My mom asked her what was wrong and we were all there in the room. She screammed, "I don't want any dumb fairy coming into my room at night" So my mom said she will let the tooth fairy know and then later just told her the truth. It was not worth a nervous breakdown, it was supposed to be fun. We still laugh about the dumb fairy.