need help to chill - incident with Ellie

[Elgama]

Its one of those silly things I should have forgiven and forgotten, but it won't go away, I need help to relax.

A week last Sunday my daughter was abominable in sacrament, she tantrumed through most of sacrament, at present she is being monitored and assesed for a combination of autism and epilepsy.... despite this she is doing well the raging tantrums have reduced to every few months and with this one I was so proud of her for first time she managed to take control of it for the first time, and calm herself down and come back through by the end she was looking at books. She did go on to have a minor seizure when we got home. I handled the situation well despite being hampered by other people who did not want me handling a 5 year old whilst pregnant, (I just removed her from sacrament and was going to calm down then tell her I expected more from a 5 year old) instead she was told off by the Primary President, which rather inflamed it because she was reduced to tears. In my home once an issue is over with the kids its over unless there is a reoccurance and actually by Monday I had forgotten about it. There had been a combination of factors, she had been at a firework party/brothers birthday party was late to bed, and eaten stuff she shouldn't, and on the Sunday had time at Rainbows (baby guides) laying a wreath for remembrance Sunday.

THIS week at end of primary, the children were sat down and admonished about reverence in sacrament- Ellie knew it was aimed at her even though it was a general talk and was very upset, and in itself created the niggles we had in sacrament because she doesn't feel there is any point in trying. I explained to her not everyone understood that she couldn't help it at times and that she was trying very hard... She has since forgiven and forgotten but I am very upset on her behalf, plus its messed up my FHE plans tonight I had planned on doing reverence and had lots of fun games planned but I don't want her feeling got at - I had deliberatly left it over a week from the incident so she wouldn't.

I have tried explaining to the Primary President that before she has seizure there is a distinct personality change, she starts to whine, becomes difficult to control etc. Should I say something more or take my daughters example? It was only a slight seizure (she just wet herself and collapsed for a couple of seconds), but so many other things contributed towards the tantrum - and it just took the edge of me being incredibly proud of how far she has come in dealing with her tantrums and the strength of character it showed. I felt although i understand people don't understand what she can go through, that all the telling off and disapproval she got from people was the complete opposite of the love and pat on back she should have got. The Branch President handled it fantastically just grinned at her and said some weeks you just can't win huh.

Do you think it would be out of place to ask our branch president to read out a letter about Ellie in branch council?

-Charley

Edited November 17, 2008 by Elgama

[BenRaines]

I don't know that he needs to read a letter but if he is informed it would not be odd to have him explain, if he hasn't already, in branch council, to those in callings what her issues are and how it is best to deal with them, if he hasn't already.

Ben Raines

[gabelpa]

I just feel it may have to be quite detailed - because we don't have a diagnosis I have just given basic information - part of it was my fault previous Sunday I think when people made comments about it I just laughed and said she was like her Great Aunt Marie, she had creative personality and that maybe she would make a career out of it like she did (she became an old fashioned Nursing Sister/Matron).

My fear is that Ellie will feel unloved - its very easy for her to see emotions and relationships in black and white. I have no issues with primary president disciplining her for an issue that happens when I am not present and in primary but this wasn't

-Charley

[NeuroTypical]

I have tried explaining to the Primary President that before she has seizure there is a distinct personality change, she starts to whine, becomes difficult to control etc. Should I say something more or take my daughters example?

...

Do you think it would be out of place to ask our branch president to read out a letter about Ellie in branch council?

You are your child's champion. Nobody else will do it for her - it is your duty and your priviledge. I say you should certainly continue to inform and educate where necessary, and you should nag and complain and scream too (but only if really necessary).

Many folks are just clueless about various special needs a kid might have. Some folks have ingrained prejudices against kids acting out, and just don't think that the kid might not be able to control it. Take on the role of "person who knocks basic facts into people's heads". Let your kid see you being her champion. Let her know, that when some folks come down on her, it's because something is wrong with them, not with her.

Now, you've got to balance that with demanding your kid perform up to her abilities, and continue to work at control as much as she's able. You draw a fine line between helping to create an "everyone's against me victim" person, and a "I'll never be able to be a good person" person. There's a good healthy middle ground there - and if God picked you to be this kid's mom, I take that as proof that you can do it!

And unfortunately, you'll probably encounter people who refuse to be educated. Some folks just will demand to think of your kid as a spoiled brat with an overly-permissive mom. It's you and your daughter's challenge to interact with these people without running them over in the church parking lot. (It might help to fantasize about it, but for pete's sake - don't do it!)

LM

Edited November 17, 2008 by Loudmouth_Mormon

[gabelpa]

Now, you've got to balance that with demanding your kid perform up to her abilities, and continue to work at control as much as she's able. You draw a fine line between helping to create an "everyone's against me victim" person, and a "I'll never be able to be a good person" person. There's a good healthy middle ground there - and if God picked you to be this kid's mom, I take that as proof that you can do it!

And unfortunately, you'll probably encounter people who refuse to be educated. Some folks just will demand to think of your kid as a spoiled brat with an overly-permissive mom. It's you and your daughter's challenge to interact with these people without running them over in the church parking lot. (It might help to fantasize about it, but for pete's sake - don't do it!)

LM

Thanks LM - my problem is 90% of the time she is a little gem, over helpful, kind, polite etc and she is hyper intelligent very verbal she is not what most people associate with either epilepsy or autism. Its been my battle with the medical profession. I think I'll have a word with Primary President and Branch President.

-Charley

[ZionWoman]

I absolutely agree that you should talk to the primary president and her councilors if your comfortable with that. YOu should also talk to her teacher. You are the one who knows your daughter. YOu should also tell them that it was not helpful for them to get after her for her behavior when it was clearly under control by you. Sometimes, as a primary presidency, we see things beacause we have a concern for all the children in the ward but if we don't have the whole story, we are confused. Trust me, the mantle of that calling is enormous. You feel as though you are responsible for catching all the things that parents miss and helping little souls come to Christ in scary circumstances. Communicate with your primary and things will go much smoother. We are coming from a place of love. I know that when parents tell me about their children and I come to understand them, it is easier to help them.

Good luck, and stand up for your child!!

[Elgama]

yeah I am calm now - the Primary President is Ellie's teacher and I know that what she was doing was her way of helping but I have told her in the past that Ellie has a personality change before a seizure - and becomes difficult to handle,

She is an amazing Primary President, Ellie normally adores her and she can get my daughter to listen like noone else - just I think sometimes poeple in my branch forget I am a Mum of soon to be 3 and not a 15 year old kid,. She was doing her best to be helpful but I was not embarrased or alarmed by Ellie's behaviour

_Charley

[Hemidakota]

LM post [excellent Bishop] - - - DITTO BRO!

[Guest Alana]

I teach a primary class and I try to be sensitive to each of my kids but sometimes I'm totally tactless. You told the teacher/president what is going on with your daughter... excellent, totally needed and appropriate. She did somethign that made things worse... she's only human, so I'd let it go. But, if you feel like she continues to make things worse, go to her again and let her know what you think will help. She's probably trying to help, just not quite hitting the mark. Oh and pray for her, that she'll be lead by the Spirit. The spirit is the only way I know to be as close to the mark as possible.

[WANDERER]

You know, it won't help her to get Ellie onside/reachable and teachable etc if Ellie feels she's not helping...so that's something she's going to have to patch up and sort out on her own with her relationship with Ellie...she has no other choice. I think it might be a good idea to clue her in since she's got a bridge to fix. You may get a variety of responses:

1) the other kids were mucking up so the reverence issue was targetted at them and making sure they knew expectations//kids don't get individual differences..they thought they would do it too.

2) ...it was on the teaching plan but I realised halfway through that Ellie was not looking happy and put two and two together...I feel bad about that

3) it was top-down pressure...someone else complained that I wasn't teaching reverence well-enough. (unsaid: but I won't be doing that one again or at least not in that way).

4) I had no idea...I felt something was wrong...thanks for clueing me in.

It's also likely that you'll get a blank response...they may need more time to think.

Anyway go in there and help and support. Umm and try and think of something good to say...you know criticism may be the most interaction and feedback that she gets from parents. Let her know...and then patch her up...LOL...cause the last thing you want to happen is for the reflected dread of the conversation she had with you to be hovering on her face when she chats to Ellie...you're aiming for a smile about how nice you were all about it and a 'what a lovely mum you have' aura. No she's not going to pick on Ellie because you said something to her...but kids pick up on what adults try to hide. They pick up on whether you and another adult are getting along or not in general.

People want to do the right thing in most cases...sometimes it's all about enabling. And I think building up that working relationship with Ellie's primary president is a good thing. You know, if you leave someone with a good impression and feeling they are more likely to remember what you were trying to communicate to them. Like the doctors that you talk to they may not get it the first time either...or the second...but something you say will click eventually. It may not click for a while, but don't give up. Think for a while...how long did it take you to realise where Ellie was at and what was going on. They're going to need you to step them along the right path a little. Unfortuneately, I know myself that I haven't gotten what parents are saying to me sometimes until even a third chat for whatever reasons. Not great. But no one knows a kid like their parents do and that's why a catch-up chat is a good thing. It helps.

And at the same time you're modelling to Ellie how to deal with problems and resolve them. That might help if you totally understand why Ellie is so upset with this person after chatting to them LOL.