Don't know what to do anymore!

amother

Smokey

Tue, Apr 07 2015, 10:31 pm

We got a thorough expensive workup. We have been to the best because we can afford it. I promise you, not every kid gets a real diagnosis. Well they did give him ADHD, inattentive form, but that doesn't even address our real concerns with him, just his academic struggles.

Just because you see a lot of specialists, even the best ones, doesn't mean you get a diagnosis. We've even does genetic testing and an MRI over the years.

At the end of the day, you treat the symptoms and pray as hard as you can.

amother

Seagreen

Tue, Apr 07 2015, 11:15 pm

amother wrote:

Havent had much success with relief either, so Like I said, there is no where to turn! I feel like hashem gave me this wonderful adorable little boy, but he gave him this miserable, difficult personality, but did not give us the tools to help him ! Yeshiva system is actually making things worse and there are no other options in my community, me and dh are not naturally calm or overly cheerful people, so I'm confused and upset. What does hashem want me to do with this kid? I don't see how to help him, there is no one out there that cares or helps and we feel alone, lost, depressed, watching our kid go down in flames and making the rest of the household miserable too.

Since you seemed to have tried everything with your son, and are ready to give up, maybe try doing just that. Give it up, give it to Hashem. Tell him that you've done your best, and now it's His turn to give your son what he needs to succeed. Pray for your son every day, and try to see what area you can improve in so that you can be the best role model for your son.

Work on acceptance of your son for the way he is right now. Every night, if he sleeps before you, go to his room and look at him for two minutes, giving him unconditional acceptance and love. If not, try to find an opportunity daily to just look at him and give him acceptance. Then sit back and watch the miracles happen.

debsey

Tue, Apr 07 2015, 11:37 pm

amother wrote:

I'm confused - are you OP or someone else?
Something is very odd about this information.

For one thing, why the MRI? It is not a diagnostic test for ANYTHING psych related (unless it was a functional MRI - and if you were in a research facility that offers them, you probably got an excellent workup.) Does your son have a traumatic brain injury? No one diagnoses ADHD using an MRI - I must be misunderstanding you.

Genetic testing - do you mean the blood test for which form of ADHD you have? The one Dr. Hizami administers? If so - those tests are still in research phases and aren't actually used to do anything but confirm diagnosis. I'm still confused.

If ADHD inattentive doesn't explain your child's symptoms, you go back to the diagnostician and ask for more tests!

In terms of "treating the symptoms" - yes, that's all psych tests and psych treatments DO - they treat the symptoms! But since the symptoms are usually the problem, that works out just fine. Most psych disorders are "syndromes" - co-occurring symptoms, NOT due to actual DISEASES (ADHD is very different than strep throat!)
But a competent psychologist can get you very far, just 'treating the symptoms'.......

mandksima

Wed, Apr 08 2015, 6:41 am

I wrote up posts twice already and erased them as I am fearful they won't be accepted or taken the right way but I still feel a need to write if it can help even one mother.

I have been through this too with my 14 year old. I have had diagnoses made, have tried many medications and years and years of various therapies. Nothing really has been a life changer except for my newest effort. I have taken a parenting course that has changed the way I feel and think and relate to my children. I have learned to give the responsibilty of achievment over to my kids as I am not responsible for their life choices. I have worked very hard on accepting them and not feeling guilty at all. I have done my part. The rest is up to them. There is nothing at all that I could have done differently to make my child more "normal."

The more I believe in my child and the less I believe in the diagnosis, the better. The diagnosis definds our kids and gives them a small box that we (the parents, teachers and medical professionals) don't believe they can come out from. They, in turn, believe it as well. I am not saying not to trust in your therapist or doctor, just keep in mind that the amazing stories we all hear of kids defying the odds are just stories where the parents believe in their child so much and don't treat them as they have any handicap (physical, mental or emotional) and know with all their heart that their child can acheive what any other child can.

My child/young adult is extremely difficult. I am working hard to not react to her tantrums, cursing, screaming, kvetching, endless rants and insults. They are like an ugly mask that I can see through now. I think of a good moment with my child (there are few to choose from in my memory) and I focus on that when my child acts up. I even think of good reports/stories others have told me about my child to remind myself what my child is capable of but just doesn't like to show me. My child chooses to show me sides that aren't pretty to connect with me (negatively usually but my child can choose positive ways as well.) Children learn very early on what buttons to press that will annoy us the most and envoke the feelings we are ashamed of. I always envoked guilt. Everyone is different. Just find what feeling is most envoked with you (feeling sorry for them, angry at them, feeling like you didn't do enough, etc.) and try not to feel that anymore. Tell yourself that they are choosing to act in a way that brings themselves to the result and they can change it. Make them responsible. 100%. You will be surprised at what they can achieve when you fully believe that they can do it.

We are living in a backwards society for all of our modern advances. We are feeling a need to do everything for our children instead of letting them join our familes, be part of our lives and follow us, the parents. They are given little or no responsibilty and, in turn, are not feeling able to do any more. Think of other cultures that have little kids, let's say age 6, tend a flock of sheep and be responsible for each one. They are given a responsibilty so big that we wouldn't trust our 15 years old with. They are raised from infancy with this attitude and it comes from the parent's trust, not from the child's ability. Ability grows with faith and trust in our children. 3 year old children pouring hot tea for their elders. Can you imagine? If they could do it, so can our kids. It is not considered an issue in other cultures and times. I am saying to let some of these concepts be accepted into your mind, not to all of a sudden let your children do these things that they weren't raised with.

My child is choosing to not be as outwardly religious as us. That is the most recent development. It really does bother me (I worked so hard to get where I am religiously) but it is also a way that the child feels can make me feel guilty and envoke embarassment. I am working hard to not feel responsibilty for this child's actions as we don't have remote controls for our children. We have to treat older children the same as younger sometimes and ignore their adult tantrum. They will have natural consequences from bad behavior. They will learn quickly. I don't believe in punishments that come from my angry reaction. They will do it again and again to ellicit my response. The best answer is to look at them with love, not feel anything bad about myself with their action, and if you want, calmly remind them what natural consequence will occur from their action (they might miss out on something, they will be left behind, etc...) Even yelling at them is not horrible. If it happens, they brought on and I will not feel guilty or like a bad mother if I react. I am regaining my confidence as a mother.

Even not liking my child is okay. If they don't behave nicely to me, insult me or make me feel sad or badly, then they get that result. I do love my child and don't want anything bad to happen but I shouldn't feel like a bad mother if I don't like being around my child much. It is about the behavior, not the child.

I spent more than 70 hours in these classes and my life/parenting technique has been forever altered. I can not really help anyone who is not ready to see things differently but they are welcome to take courses of their own. I am having to forget that difficult diagnoses like ODD and ADHD even exist for this to work. Years of doctors and therapists telling me that my child isn't capable of such and such. Those diagnoses didn't help me one iota. They kept me prisoner and without faith. I hope someone here can understand the words I wrote. I was so beyond help like most of you sound. It is a process and I studied a lot of psychology so it is extra hard to hear that a lot of what I believed as fact can actually be untrue and not helpful to the success of our children.

I have also started to not put myself last. I need to give myself priority because as a mother, I need the strength. I believe I always put myself last because I felt like I had to give all my strength and effort to my kids. I took all of the responsiblity to ensure their success instead of making sure it belonged to them. I am working hard every day to make what I want to do a priority. If I want to sit a read for a little, I try to do that. I am giving to my kids plenty but now I realized that kids learn by watching us and I don't have to constantly teach them what is right. They know when behavior is wrong. The most important 3 words I have learned are I AM ENOUGH.

imasinger

Wed, Apr 08 2015, 7:18 am

Mandksima, beautiful and heartfelt post.

I didn't have it in me to open this thread till now, because I have been too stressed with my own challenging children on vacation.

For me also, learning to parent better has made a difference. I figured I was experienced enough that parenting classes wouldn't have much to teach me, but they did, and I am still learning.

For the posters who say their kids can concentrate for hours so how could they have ADHD, look up hyperfocus. And also look up a list of what typical ADHD symptoms are. It's much more than classroom attention.

Spending at least 10 minutes a day on one-on-one time (where child chooses nonelectronic activity and gets my full and undivided attention) makes a huge difference in their general attitude and behavior. All my kids need it, even the 20 year old.

I don't always like my kids; they can make me tear my hair out. They rarely help unless I beg or bribe, and often not even then, they can be rigid, oppositional; and mean, chutzpadik, and insulting (but hypersensitive if someone even looks crosseyed at them). They can do impulsive and incredibly headshaking things. They break rules that other kids would never dream of breaking.

But I really do love them, and they know that, and they love me. The good moments are a talisman to keep in the brain when going through the bad ones.

I daven like crazy that they will all turn out OK.

I strongly agree with Debsey about leaving no stone unturned. It has taken multiple tries to find effective therapists and modalities, and things change, so even yesterday's success may not be right for today. However, I see this as the most important work Hashem has given me to do. I will not give up on myself, or on them. Somehow or other, I will help them find their way.

I write this more for myself than anything else, because what I really would like is a little (or a lot) of time) to rest and regroup. To live in a world where people are courteous and helpful and appreciative, and are occasionally willing to put you first.

amother

Smokey

Wed, Apr 08 2015, 8:57 am

I did the MRI with my son. I am not the OP. The additional testing was when he was very young because of serious motor delays.

Those concerns still hold but the behavioral, emotional and learning problems are our main concerns as he has grown older.

I don't care any more about a label. No more specialists for us. Even if someone could put a specific "name" to our problem, it wouldn't change our approach right now.

Debsey, I know you mean well, but I urge you not to push that we're all simply not finding the right doctors. Many kids are a unique composite of challenges and quirks and it's not a matter of finding some sort of diagnosis. After so many years of struggling, all I need is empathy.

Btw, I'm married to a doctor. I'm not going about this cluelessly.

debsey

Wed, Apr 08 2015, 3:46 pm

amother wrote:

Ok - I was confused about who is the OP. An MRI for motoric issues makes sense.

I have a big problem with the current culture in the frum world where people go to social workers or to programs like Neurolinks and other totally not credible places for an "evaluation" and a "diagnosis".

There are people specifically trained to do this - yet most schools and most people skip this important step. Without a diagnosis, you don't have a proper treatment plan, which means all the money spent on therapy could be totally going to the garbage (if it's the wrong therapy for the wrong condition!)

A label can also be a FREEING thing- it says 'this is what's wrong, this is how to fix it' and it creates a plan of action. The kid is not "difficult" or "spoiled" or "hard" - the kid has bipolar disorder, which means his moods can be hard to manage. Or has ADHD and therefore can't always control his impulses. I have personally seen how a good diagnosis from an excellent diagnostician works WONDERS for kids.

I'm not saying YOU specifically aren't finding the right doctors. I'm saying there's this big push in the frum world towards using people who are not trained diagnosticians, and a lot of people who say "my kid isn't diagnosable" are not using adequately trained diagnosticians. It seems expensive to evaluate, but it's often so critical.

amother

Sapphire

Wed, Apr 08 2015, 6:38 pm

There is a radio show on satellite radio called doctor radio. It is run out of nyu langone medical center. They have a show on there called "about our kids". I have heard similar questions being asked on that show. Perhaps you can call in when they are airing 877.nyu-docs, or email them docs@seriousxm.com.
They may have better suggestions of who to see.
I'm sorry you found my previous post obvious, and simple. From my experience, though, that is what works.

debsey

Wed, Apr 08 2015, 7:15 pm

amother wrote:

NYU has a FANTASTIC child diagnostic center called the Child Study Center - they are the gold standard in diagnostic evaluations. If a parent can afford it - that's a great recommendation. But it is PRICEY.

amother

Vermilion

Wed, Apr 08 2015, 7:38 pm

My issues with my challenging child are different than OP's, so I won't offer specific advice.
But I must disagree with those pushing for ever more diagnoses. For one thing, not every diagnosis has a treatment, and for another, sometimes there is no diagnosis. Sometimes we just have to accept that this is how G-d made them, and it doesn't matter what we call it.
As parents, we didn't cause this, and by and large, we can't change it. We can and must fight for our kids, manage the difficulties, pray for them, and do the absolute best we can. But that's all we can do. We can't always fix it.
And in my experience, the yeshiva system is limited in how much they can help.
My guy is 18 now. He managed to successfully complete high school, and is in yeshiva now. He's accepted into college, and got his drivers license, though he refuses to drive. He barely has any friends. I don't know how he will keep a job, or get married.
But G-d will have to watch over him.

amother

Periwinkle

Wed, Apr 08 2015, 8:29 pm

Op here, I totally agree with debsey, that in our community we get pushed to unqualified and wrong people, like social workers or those without schooling and licenses , that is a big part of my problem, not being able to find the right dr/ therapist to go to. I would love a recommendation to someone who can tell me what is going on with my child. This yom Tov has been horrendous, he has been even worse than usual, screaming at the slightest provocation, storming out, being unbelievably chutzpahdik...I can't even talk to him, he stares away or mumbles chutzpah under his breath...I feel so bad for my other kids, they dont have a minute of peace or enjoyment!

amother

Dodgerblue

Wed, Apr 08 2015, 8:43 pm

A few months ago Mishpacha magazine had an article about Dr. Steinhart? near Monsey who seems to do a very comprehensive battery of tests.

chani8

Thu, Apr 09 2015, 8:18 am

amother wrote:

Um, bad idea. Children actually feel when you fake it. I'm surprised that you don't know that.

I respectfully disagree. People cannot read minds. Children are not magically able to see inside our heads and know what we are thinking. I can act loving and kind and respectful. I don't have to feel it.

This is a big issue though, one that I just ask you think about, rather than believe what we've been told for years about it. It's just not accurate, ime.

debsey

Thu, Apr 09 2015, 8:47 am

chani8 wrote:

I agree. Plus, with loving feelings, you can "fake it till you make it." I have found myself feeling more positive towards a child simply because I forced myself to talk in a calm, patient, loving voice (even when the child is being..... "challenging")
As I speak calmly and lovingly, I find myself calming down and remembering that I actually DO love this child, moody episodes and all. It really works!