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Forum -> Parenting our children -> Our Challenging Children (gifted, ADHD, sensitive, defiant)
The catch 22
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mandksima




 
 
    
 

Post Sun, Feb 05 2012, 1:45 pm
I can relate to this so well. The difference is that I have two kids who have been labeled from birth with certain things and other difficulties have been diagnosed through the years. They are twins who are almost 11. They look normal enough to strangers that I feel awkward when they act up in public and no one knows their issues and understands when I ignore the "small" things according to my definition and only make a big issue out of the really bad stuff. To others, these "small" degrees of misbehavior is huge. Oh well, that is what life is like sometimes. I feel like I do a bad mothering job in public but I know I do what I need to with them.

I also tell others when appropriate but don't take out any ads. It is hard for strangers not to tell something is a little off when they are in a certain mood but often they surprise me and act beautifully and I am very proud of them.

Regarding getting them the services- right now we are in the middle of trying to get them covered for something and I have to point out all of their negative parts and go into great detail. It bothers me so much because even though what I tell them is 100% true, only I see all of it and it makes them very vulnerable. I hate pointing out all of their negative as I spend countless hours reminding myself daily that B"H they are here, they are like Hashem wants them to be, Hashem gave me them as a gift, etc. They are already involved with many weekly therapies but we would like additional coverage and it would very beneficial. Unfortunately, it breaks my heart.

I can't give you advice for your community is different than mine. I don't worry about the shidduch process like you, I worry more if these kids will ever get married and who will watch out for them then. I have 2 other kids too, B"H but I know Hashem will send them their shidduch regardless of their siblings. I think as a parent, one has the responsibility to get every service for their child if there is a good chance it will help make them into the best they can be in life. If my kids did not have the intense therapies they have had since birth, I could not imagine where they would be today. They have made remarkable growths that we can see when looking at the progress long-term. If I had held them back from their therapies because of worries regarding taints on future shidduch prospects, I would totally feel that I would have to give an accounting with Hashem over that and my defense would not be adequate. A rav who understands these things might give you some advice. There are many families that would not shun you for a shidduch if your child is labeled special needs. There are many that would, of course, but I hope you would not want to marry into those families.

B"H we live in times that can turn children with little to no future into fantastic, really wonderful adults with great sensitivities to others because they have been through the same. I feel that just because their issues aren't physical in nature doesn't mean we have the right to ignore them and hope they go away on their own. Hashem wants us to give them everything they need. What if your child needed a transplant that would not be life or death related but just greatly improved quality of life? Would you take into consideration whether or not someone might find out about it and it would affect shidduchim? I am not judging you, just giving you something to think about.
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amother


 

Post Sun, Feb 05 2012, 2:10 pm
Yes mandksima, I do see similarities and I can really relate to the difficulties you describe in public. There are definitely certain branches of my family who think I am a lazy, incompetent parent because they see me allowing certain behaviours that they think are inexcusable. In public places, I am sure people look at me strangely because he appears to be a perfectly normal kid.

By no means do I worry about shidduchim in the way that you are writing about. I am talking about him himself. Because of his trememdous strengths BH he has the ability to grow up to be an exceptional person IY"H. On the other hand, on difficult days I wonder how I will be able to marry him off at all.

Hatzlocha to you with yours!
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mandksima




 
 
    
 

Post Sun, Feb 05 2012, 2:24 pm
Ah, then I read your worries incorrectly, sorry about that. I would think that giving him all the services now would only help future shidduch prospects for your son, as he would turn out a better person for it. Therapy can help him be more equipped for marriage and more communicative, hopefully, if those are some of his problem areas.

There are good days B"H, that I think, yes, everything can really work out fine. Don't kid yourself, though, it is so easy to have difficulties in marriage, why make it harder for him?
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funkygirl




 
 
    
 

Post Sun, Feb 05 2012, 2:43 pm
did you ever consider doing a neuropsych evaluation, that could help you target the problem?
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gold21




 
 
    
 

Post Sun, Feb 05 2012, 5:52 pm
maybe you can avoid a label and instead just say that he "tends towards some spectrum-like behaviors". I think that is basically what youre describing anyway.
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Happy18




 
 
    
 

Post Sun, Feb 05 2012, 6:01 pm
http://www.nytimes.com/2012/01.....t=cse

Just figured I'd post this in case anyone who this directly effects hasn't seen it.
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amother


 

Post Mon, Feb 06 2012, 4:37 am
funkygirl- all of his evaluations have gone either way depending on who the professional was. Whatever specialty the evaluator was, they were able to latch onto it and "find" what they wanted. That often happens with kids who are sort of on the borderline. I am done with evals, I know what I see on a day to day basis and no one seeing him in a clinical way has ever been able to get the whole picture.

gold21, that is kind of what I say (to myself and to those helping him), and I guess that is how I will leave it for now. It is frustrating at times, but I am fooling myself to think that everything would be easier if I just labelled him.

Happy 18, the article was interesting. I have mixed feelings about it. If they are going to drop the label, then they at least have to acknowledge that kids who have theses tendencies still need help and there have to be services for them even withoout the label.
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amother


 

Post Mon, Feb 06 2012, 7:01 am
People want those labels b/c they want free help. Help is available for every problem to every person if you're able to pay for it. That's what the big uproar is about. People want their kids to qualify for free autism related services. No one's denying their kids the option of help. But how many kids have problems, whether academic or emotional or even medical, that don't fall under some diagnosis that allows for state paid therapy? The system is cutting down b/c the system is broke.

It puts parents, especially those like us who pay tuition, in an even tighter financial position. I call my son's therapy our fifth child. Some is free, much is not.
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gold21




 
 
    
 

Post Mon, Feb 06 2012, 10:44 am
amother wrote:
funkygirl- all of his evaluations have gone either way depending on who the professional was. Whatever specialty the evaluator was, they were able to latch onto it and "find" what they wanted. That often happens with kids who are sort of on the borderline. I am done with evals, I know what I see on a day to day basis and no one seeing him in a clinical way has ever been able to get the whole picture.

gold21, that is kind of what I say (to myself and to those helping him), and I guess that is how I will leave it for now. It is frustrating at times, but I am fooling myself to think that everything would be easier if I just labelled him.

Happy 18, the article was interesting. I have mixed feelings about it. If they are going to drop the label, then they at least have to acknowledge that kids who have theses tendencies still need help and there have to be services for them even withoout the label.


OP, not every child will fit an exact label. Some will be "borderline", some will only have certain Spectrum-like behaviors, etc. With regard to the Spectrum, labels can be quite tricky. Thats why theres the PDD-NOS label, NOS is for Not Otherwise Specified- I.e. a child that is neither here nor there but fits no other label. I think that you should just stand strong and say that your child has some Spectrum-like behaviors that you are working on with him, and if anyone poo-poos your concerns, just smile and say that you have a professional backing you up, and that every mother is better safe than sorry. With regard to shidduchim, I dont think it will be an issue as long as he remains in a mainstream school and appears to be "normal" to the majority of the world.

Lots of luck and lots of nachas! Tongue Out
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amother


 

Post Mon, Feb 06 2012, 11:03 am
Thanks, that's pretty much where I am at now!

Thank you so much to all of you who responded. It helped me put things in perspective and also made me realize that there are others out there who understand this "no man's land" that I find myself in. If anyone has anything to add, please do, I will be following.

Thanks again!
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