How to Explain them

Discussion in 'General Parenting' started by ML, Nov 27, 2010.

  1. ML

    ML Guest

    I have a hard time explaning manster's diagnosis to others. There are times I want to let them know that he is the way he is for a reason. Mostly I just want for them to give him a wee bit of slack for his behavior and maybe not be so judgemental of me and maybe, just maybe consider it might not all be bad parenting. Though I certainly could have done, and will continue to try to do, better.

    Manster does not present as AS. At all. Also, most people expect swearing and major contortionsism (if that is a word) when I say Tourette's. ADHD is a no brainer and most people can wrap their minds around it so I use it a lot. What he presents as is a brat. And he is that too. I say no way too often to avoid meltdowns and that looks like weak parenting. That's my parental failing/weakness and what I am working on. Mostly it's none of their business and I can't control others' opinions of us. But I don't feel the pressing need to tell everyone I meet, just those that are fairly close to us.

    Currently manster has regressed with anxiety. He was able to stay at home while we went to the store for an hour and now it's an issue again. He doesn't want to go with us (that would require leaving the house) and he will beg and badger for one of us to stay with him and I often give in.

    God grant me the energy and strength to do this.
     
  2. HaoZi

    HaoZi Guest

    I just say kiddo's brain is wired a little differently from most, that such requires special treatment/handling and medications to help, and that I don't expect them to "get it". My basic emphasis on words implies that I either want them to make the effort to understand a bit more or else shut up and leave us alone. Their choice.
     
  3. Josie

    Josie Active Member

    I have been trying to give my family information about my daughter's illness for 3 years now, hoping they would be understanding and not judgemental. I thought they were supportive. Recently, though, my daughter went to stay with my parents and they were judgemental and not kind to her. Normally, when they are around, she puts on her happy face and looks normal enough. She was there for so long that she didn't do that this time.

    My mother did try to tell me where she thought I was doing the wrong thing and I did tell her she didn't know enough to make those judgements. I am still struggling with the pressing need to convince them that she is really sick when I think I really need to work on not letting their opinion matter to me. At this point, I don't think there is much hope of getting them to understand. I don't think people can understand who don't live it.

    So, I don't really have an answer to help you, but you are not alone in this. I am going to go back to our long-time, sporadic therapist for help in sorting this out. Maybe counseling would help you, too.

    My daughter was anxious and not wanting to be alone at one point. We did CBT/ERP for Obsessive Compulsive Disorder (OCD) for her and that has gone away. You could work on this on your own, by leaving Manster alone in the house while you left to go outside for a while and then increase his ability to cope by increasing the time and distance you were gone, gradually. A great book that describes this technique is "What to Do When Your Child Has Obsessive Compulsive Disorder (OCD)" by Aureen Pinto Wagner.

    I could never feel good about leaving her when I knew she was going to get herself so worked up with anxiety if I was gone. Helping her to manage it in shorter periods of time felt more like the right thing to do to me.
     
  4. crazymama30

    crazymama30 Active Member

    I would try to explain the symptoms, not the diagnosis. People understand anxiety or nervousness, hyperactivity, and say that he is very rigid in how he wants thing done. Explain that he thinks differently than others. I also tell people that with my difficult child? He does not mature as quickly as others and that seems to help too.
     
  5. Wiped Out

    Wiped Out Well-Known Member Staff Member

    With my difficult child his disabilities are so obvious it is hard to miss. I'm mostly an open book when it comes to him. Still there are times when I think people believe he has more control than he does and they don't truly understand.

    I'm sorry Manster is having a difficult time with anxiety right now. We are dealing with similar issues with difficult child. He never wants us both to be gone. He will come along but we don't always want him to. It's a long story but I don't want to hijack your thread-lol. Just wanted to let you know I understand how wearing it is.
     
  6. timer lady

    timer lady Queen of Hearts

    It's really a hit & miss with this situation. For myself, when the tweedles were much younger & more prone to major meltdowns, rages & dissociative states I'd fully explain the situation to those who had to know. Teachers, family, friends, etc.

    I had responses all over the place ~ from "hand 'em back" to "aren't you being a bit too hard on kt/wm?" kind of stuff. I informed these people because of the safety concerns. I didn't go into background hx with all; nor did everyone need to know the diagnosis's. It was the dangerous stuff. That usually required a bit of education. My child(ren)'s brain is hard wired or there is a neuro chemical issue, emotional stuff & all of the above.

    I have to say that I found myself explaining that I had adopted my children so I wouldn't be accused of past child abuse.

    I see very little in parental failings my dear; rather I see a wise mum choosing her battles wisely. There will come a time where you will be able to "push back" a bit more; heck you may even stop being a therapeutic mum & let your kids know you have real feelings. I'm doing it & the tweedles hate it.
     
  7. Marguerite

    Marguerite Active Member

    We do tell people as needed, sometimes we add basic and most obvious symptoms (such as his anxiety is a lot worse in noisy, crowded situations when he tries to cope by controlling people. But the word "atypical" takes us a long way.

    "You say he's autistic, but he really seems to enjoy mixing with people. I'm a total stranger and he's told me the entire family's life history."
    My response - "He is atypical. He likes people, he is very outgoing. But he is still socially inappropriate."

    We also use "his brain is wired differently."

    Too much detail and people's eyes glaze over. Or they think they are now experts, they go home, do a bit of reading then come back to share their new-found wisdom with you and educate you. Another reason for not giving out too much detail - "It's actually a lot more complex than that, I only gave you a thumbnail sketch last time."

    Marg
     
  8. 1905

    1905 Well-Known Member

    There is a saying, I forget who said it but it's this..."Other people's opinions of me are none of my business". I know that no matter how many times I explained that difficult child's brain is wired differently, people would just smile and I could tell they were thinking it's just bad parenting. You can't let yourself care or worry about what they think. Their judgements are based on ignorance. Unfortunately.
     
  9. TeDo

    TeDo Guest

     
  10. ML

    ML Guest

    Thank you everyone. This helps soo much.
     
  11. Marguerite

    Marguerite Active Member

    TeDo & ML, I do understand this problem, we have experienced it in spades. And not just with difficult children - my health condition is rare, not well described and very difficult to explain. For years, my own family thought I was a weirdo. I lost a lot of friends; most of the friends I have now, have only known me since my disability. Ironically, my health has improved a great deal (with regard to tis disability) and friends are having difficulty accepting "the new me".

    Regarding difficult child 3 especially, friends were not very accepting of the diagnosis. One local doctor loudly (in the hearing of a room full of patients, most of whom know us well) told me to "stop trying to find things wrong with your kids."

    You can't convince people. It is a famous saying, "A man convinced against his will, is of the same opinion still." However, you have to cope, you have to access services and you have to continue to deal with the problems.

    So - as I said on another thread, I found ways to be useful. When my child had a play date, I went along too and say=t chatting to the mother and drinking coffee, or hel[ping her with dinner or anything else. It meant I was on the spot if needed and it also meant that the parent saw how I handled difficult child 3 and valued it. It also was demonstrating how I do it, for when I wasn't there. It also meant I was more trusted with THEIR child on a return play date.
    Most parents of their kids still found us both in the too hard basket. But enough have appreciated this, for difficult child 3 to have friends he can drop in on at any time.

    It's hardest when it's your own family who disbelieve the diagnosis or who give you a hard time. We found that once we started using "Explosive Child" methods, friends/family fell into two camps - the ones that supported it and went along with our requests, and the ones that quietly thought we were nuts and were prepared to go so far as to discipline our child behind our backs, in their own fashion.
    Now, it is a function of "Explosive CHild" methods, we have discovered (to our amusement) that the family members who do NOT come on board and use it, become the most intense focus for the child's anger and oppositional behaviour. ANd to my mind, it means those family members are being severely punished for their recalcitrant behaviour. Eventually they complain to me about my child's behaviour and I then tell them - you have chosen to punish this child using a discipline method which is now outdated and discredited, as far as this child is concerned. I am now getting much better behaviour results with my methods, but if they continue to use their own old methods, which are perfectly fine for most kids but not this one, then they will continue to 'enjoy' the child's justified hostility. I then offer (again) to demonstrate how to handle the child and especially emphasise - don't try to do too much; choose your battles and as he achieves certain standards, we can gradually up the ante then. Not now. And I also stress - natural consequences.

    But friends and family who don't get it, will never get it even with all your explanations, until they work it out for themselves. We did what we could to explain, of course, to people we wanted on board. But if the explanation didn't 'take', we stopped beating our heads against the wall and also tended to avoid those people who would not come on board. Life is too short to let such people control our lives. Over time they wither stop controlling, or they stop being in our lives. It's as simple as that.

    And I get REAL cranky with family who think they know better tan me and who try to discipline my child when they think I don't know. Particularly people who have known us well enough and for long enough to know it's not our method, and especially when their own child-raiding capability is badly flawed.

    But it IS human nature. Just watch out for it. You may not realise it's happening, because the child may be too loyal to the family member to complain to you. The clue will be the disciplining family member personally. They will either tell you smugly that your child will be all right now they've set them straight, or they will be sullen and resentful because your child disrespected their discipline efforts. When you see those signs - go question your child. Carefully, gently, with no leading questions. "What happened?" is the best option, coupled with, "you are not in trouble if you tell me the truth."

    It is not easy being a parent. It is even more difficult being a parent of a difficult child. And I do not cut off these disciplining people because if I did, we would have zero contact with any friends or family. We just maintain supervision when such people are around.

    Marg
     
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