Understanding???

[JoAnn1989]

Here is the thing I am a young mother to two wonderful children. I myself have been diagnosed with a behavior disorder for over half my life. One of my children has recently been diagnosed with the same disorder. I have been searching around for new ways to manage behavior that aren't the ways my mother managed me. But then I see things where people lable their children by there disorders and it really strikes a nerve with me. For so long I believed there was something wrong with me schools put me in different classes then other students teacher singled me out, I was told I was bad when I didn't know what i was doing wrong. For so long I believed I would never amount to much and that I was only labeled by my symptoms but I am so much more then that. Now that I have come to realise that this lable is not all that I am and all that I can be I feel free. Though it bothers me that people are still labeling their children as disorders.

i guess what I am trying to get at is what good can come of a place like this where we speak of our children as symptoms and disorders when there is more to them when they are whole people?

 

[busywend]

Well, we may search out a diagnosis, but you can not assume we label our shildren. We search out a diagnosis in order to figure out what will help them be the best they can be. To help them not stick out and feel 'different' when they are young. As they get older, it is freeing to not have the label or diagnosis or constant people trying to help you fit in. I think that is often what makes difficult child successful. But, when they are young, they are subjected to so much from other kids, that you have to help them get through it.

 

[SuZir]

i guess what I am trying to get at is what good can come of a place like this where we speak of our children as symptoms and disorders when there is more to them when they are whole people?

Parenting a child with certain disorders is not always easy. It is not even easy to parent a difficult child who doesn't have any label (my difficult child only got his first real label (PTSD) last week, just few weeks before he turns 19.) Good that comes out of this type of place is, that it is a place there you can talk about your child in straight way. In real life you often had to consider protecting your child's privacy and reputation. Being able to vent here does help when dealing with the child.

It also helps, that one has child's label in the signature, because many disorders have certain characteristics and other can more easily make suggestions or give advices that has worked with kids with similar diagnosis and in similar situation. It also helps others to remember other board members situations, which makes discussion more relevant. And it does also make it easier to share enjoyment of our kids triumphs, when others can remember also the struggles.

Sometimes it is also very useful to separate a behaviour and a child. Often undesirable behaviours are things our kids can not help and it is good to keep a separation between unacceptable behaviour and a kid you love in mind.

Our kids are whole people, but those disorders are a part of them. Sometimes very big part.

 

[hearts and roses]

i guess what I am trying to get at is what good can come of a place like this where we speak of our children as symptoms and disorders when there is more to them when they are whole people?

I think that if you read around the boards, you will find that most every member here has a love for their child/ren that surpasses any labels the child has been given. Often, we discuss labeling, whether it is a help or hindrance to have a label. Many parents love getting an official diagnosis simply because they don't feel like they are going crazy anymore dealing with a child who is suffering. More often, parents are treating symptoms instead of or along with the diagnosis their child has been given.

Before my now 22 y/o daughter was diagnosed, I was against labels, medications, etc. After three years of he// and trying to use behavioral methods to help her, we finally saw a pediatric psychiatrist who was able to give difficult child a diagnosis. What was great about having this label was that I was then able to research it and discover the various methods available to help her live a full and stable life. Not everything we tried worked, but we tried. For her benefit as well as ours.

I would suggest that you try not to get stuck on the downside of labeling a child and instead use it as a way to educate yourself. Just because you had a label growing up doesn't mean your child's experiences will be the same as yours. Mental health care has come a long way in just the last 20 years. The first step is to find a qualified doctor you can trust and have open communication with without feeling ashamed.

Hugs and best of luck.

 

[JJJ]

Because NOT labeling it is harmful to the child.

A "label" provides
*direction for treatment,
*is a requirement for getting insurance/medicaid to pay for services,
*is needed to get a 504/IEP to help them succeed at school
*helps the child learn that they are not "bad" that they have an illness that needs treatment so they can do better
*provides a short-hand way for us to keep track of what each child is struggling with
*allows for research to help find new treatments and hopefully cures for mental illness

 

[tiredmommy]

With all due respect, everyone is labeled in life. The difference is that we want our children's labels to be as accurate as possible and to give a road map for the best possible path we must follow for them to grow up to be as happy and healthy as possible. So we have sought out diagnoses where applicable and treatments where possible. Often times, our children's own behavior will give them quite the negative label, we promote a better understanding and help for those that need it.

 

[slsh]

Hi Joann, and welcome.

I hope you read more around the site - we may speak of our children's diagnoses and symptoms, but the very *primary* purpose of this site is to provide support to parents who are struggling in day-to-day life, because of those very symptoms and diagnoses. I've been a member here now for over 13 years. When I found this site, recommended by one of my son's teachers, I literally cried in relief. Up to that point, the only "help" we had gotten was the endless parenting classes (which, truth be told, were helpful up to a point), well-meant but useless advice from our parents that our son just needed a good spanking, and a boatload of judgement from family members, teachers, and other professionals - we *must* be horrible parents to have a child who thought nothing of breaking windows, assaulting adults, kicking police officers, etc. ad nauseum. I just needed to know that we were *not* alone, that we *weren't* the worst parents in the world because our son was completely out of control, and .... well, honestly, I cannot put into words how blessed I felt to find this place, this collection of remarkable parents who didn't judge me and who totally got the hell that we were living in because of my inability to manage my son's behaviors or to find meaningful help.

A label (or diagnosis) is simply a starting point. My signature states that my oldest has CP and epilepsy - but that's *just* the starting point. He's got a wicked sense of humor, a smile that lights the world, and requires 24/7 care. He is most definitely NOT defined by his "labels" but at the same time, they are an integral part of who he is. When I was in a support group for parents with- physical disabilities, his "labels" were a kind of shorthand to other parents. Same goes for my difficult child, though in my experience, psychiatric/behavioral diagnoses are far less specific. Bipolar is just the tip of the iceberg (and I'm really not even sure he is bipolar at his stage). But it's a starting point.

I think the beauty of this site, and part of its purpose for being, is that we *do* recognize that our kids are far more than the labels. We want them to become functional, law-abiding adults - which for some of us was/is asking a lot given the behaviors we were/are dealing with. By sharing with the community here, we can brainstorm, come up with suggestions/ideas to help our kids be successful in home/school/community, or at the very least, offer a soft shoulder and compassionate understanding, without judgement.

As someone who has relied on this board for over a decade, and who survived raising an incredibly difficult child in no small part due to the suggestions and support I received from the good folks on this board, I can tell you that the whole point of this board is to offer support to parents as they try to navigate the pitfalls of raising children who have challenging behaviors, as well as dealing with professionals who sometimes *do* only see the label and forget that there is a whole child there.

Again - welcome. I hope you will continue to look around and join in.

ETA: One of the reasons I'm still here is because perhaps my experience will help others. And also, to be honest, to provide some hope - my kid was a disaster, behaviorally speaking, and I wasn't sure he'd survive to adulthood. As I type, he's sleeping peacefully in his room in our home. He is an utter delight - kind, thoughtful, helpful. Virtually unrecognizable when compared to the whirling dervish he was 10 years ago - and a lot of the current board members remember him back then. It's nice to share the joy of him getting a GED with people who *totally* understand what a huge accomplishment that was for him. It's good to have a collection of people who can savor the good stuff after supporting me thru a lot of not so good stuff.

 

[recoveringenabler]

Welcome! I hope you find some solace and an understanding of what we are up to here. Another angle you might consider is that for those of us who grew up with mental illness or behavioral disorders and not only took that behavior personally, tried to fix it, felt guilty we didn't have it and any number of negative reactions to an undiagnosed sibling or parent, learning of a label was an incredible relief. It was not my fault! There was a reason for that bizarre behavior and I couldn't fix it. It offered understanding and compassion. It helped me to heal.

For my siblings, a diagnosis, a label, gave them hope that they were really okay, that it was an illness that make them 'different' it wasn't something they could help. They could let go of shame and guilt. There was a reason.

I get what you're saying and there certainly is the other side of the coin where kids are labeled and then the label is all they are. However, there are also positives as well, as others have pointed out.

This site soothes the wounded hearts of the parents who are struggling, every single day, with difficult children. It provides support, nurturing, information, clarity, understanding and perhaps most important, the feeling that we're not alone, that there are others out there who can truly feel empathy. It gives us strength and courage to face what each of us has to face. It offers hope where there wasn't any. It gives us truth when we find it hard to face the truth. It gives us a safe place to vent and rail against a system which doesn't 'get' our kids and sometimes actually harms them. It offers 'like minded souls' who can hold our hands as we go through the toughest times. For some of us, it's the only place we have to get seen and heard.

I'm glad you overcame your childhood hardships and learned to see the whole truth of who you are. Your experience will likely dictate that your children will not suffer the way you did, you will make sure of that.

 

[Malika]

Well, I know what you're saying, JoAnn. To be honest, I don't think the situation is great if you are labelled and I don't think it's great if you're not labelled. Given that we don't live in an enlightened world, this isn't very surprising. I think there are advantages AND disadvantages to being labelled - though most kids who are not labelled with a diagnosis get labelled different, odd, badly-behaved, badly brought up, etc, anyway. I think other kids can be cruel to kids with differences, period. As can adults, come to that.
Children are whole people and it's very important to see that, I quite agree.

 

[BusynMember]

I hear you, Joanne. I have a son on the autism spectrum and he is so much more than that. I truly believe he is also treated as more than that. It's just that after her graduated, he did need some services for adults and his diagnosis helped him get them. I was close to posting about what a wonderful life my son is living right now, how he is maturing and loving his work, sports, and friends. When I look at him now, I k now he is on the autism spectrum, but I see him as who he is: He is my adult son with a heart of gold who tries harder than 99% of the people who exist who has a hearty laugh and an easygoing nature and is happier than most people in this world. His diagnosis is simply a means to get the extra help he needs. It does not define his heart or his soul or how we look at him.

Now I have no idea what diagnosis you had, but I've been saddled with borderline traits and a mood disorder, but I am more than that as well. We have the power to control our disorders...sometimes with the help of therapy and medications. That does mean it is all that we are. I actually think my problems made me a stronger, more aware person so I try to see the good side.

Your point is well taken.

 

[DaisyFace]

i guess what I am trying to get at is what good can come of a place like this where we speak of our children as symptoms and disorders when there is more to them when they are whole people?

Hello and welcome!

The good that is here is not in the labels - rather, it lies in the fact that we can discuss our kids and families without worry about being "politically correct". I can share my worries, my fears, my frustrations without judgment and without knee-jerk responses offered as a quick fix. (as in: Oh, all the kid needs is ______ )

We, like all parents, want the very best for our children. We want them to grow into happy, healthy, responsible adults - regardless of a label.

 

[buddy]

Hi there and welcome. I would have answered saying most of what everyone else here is saying. I'd also add that in a community like this, we may be less formal because most of us who do post here often already know each other somewhat and for example I have made it very clear that my son is my son first, he is gifted in ways I am not, etc...I love him above everyone else. But once here and sharing to give and receive support, we short hand things, now instead of my son who happens to have a brain injury and autism and attachment disorder, I might say my autistic son etc.... I trust people here already get it, it is the nature of the site.

As a long time school professional, I will tell you that what others here have said is right, labels have downsides, but kids, ESPECIALLY kids with behavioral issues are labeled no matter what. Behind closed doors people are saying wow that Robby is the most difficult and mouthy kid I have had in five years or some such thing. Personally, I'd rather have my son labeled as brain injured, and all the rest than just plain rude.

I am sorry your experience was that the label was made to be who you are rather than a challenge or condition for you to learn to manage. I hope your experience can help you guide your child to know that many of us have "labels" and in fact everyone could be labeled with something, but but it is who we are as people that is important. It would be ideal if we could do without labels, at this time however, I find on balance that the right label is more beneficial than hurtful. (The wrong label can be life destroying though, so you are right to be cautious).

Welcome, I hope if you decide to stay you will see that our objective is to support the parenting journey and to embrace our children....to make life better for us all.

 

[JoAnn1989]

Thank you so much for sharing your thoughts with me. I guess it's just hard for me to put a lable on my 6 year old since I have spent the last 14 years of my life struggling against what I was labels with. The school wanted to hold him back since he is so disruptive or I have to get him medicated by the time school starts in September. I have even thought of pulling him out of district so he can get a fresh start.

 

[TeDo]

JoAnn, it is illegal for the school to tell you to medicate your son. It is YOUR right to decide to medicate or not and it's their JOB to educate him by accommodating his difficulties. Have you requested an evaluation for Special Education services at school? They can recommend all they want (EXCEPT when it comes to medicating) but it is ultimately up to you what you allow them to do to help him. From the sounds of it, he's struggling with some things and not helping him will hurt him more in the long run. Starting the learning early can make all the difference in the world for the best outcome. He can accomplish a lot but he's just going to need a little more help than some other kids.

I can understand fighting against "labels" but I consider them only descriptions. My kids have very specific and universal "traits" that when certain people, professionals and school staff, hear it they KNOW what I'm talking about. I don't have to give full explanations of everything they struggle with. Of course there are some variations within diagnoses because of individuality. Our kids are not their labels, they are kids with very specific needs that they need help learning to live with, preferrably by drawing on their strengths.

 

[Malika]

I think partly - I may be wrong and I am just speaking for myself - the desire for there not to be a label is connected to not wanting the child to be different or have special needs. A kind of resistance to reality, if you like. In the beginning of this process, because I think it is a process, I did not want J to have a label at all. Some of his behaviours were odd and troublesome but I still basically wanted to believe that he was "normal", that there was nothing wrong. Because, as the psychiatrist I saw the other day put it, he is "not totally deranged", I could get away with that, just about. But I've slowly come to accept that there is something going on with J that makes him behave the way he does some of the time and that it's probably better for him to have a medical label for that that might, you never know, attract people's understanding and/or compassion rather than judgement, rather than being labelled disruptive, naughty, badly brought up, etc.
At the same time, just throwing medications at the problem is not very heartening. Why do YOU think your son is disruptive at school?

 

[Hound dog]

((hugs)) JoAnn and welcome to the board.

Our children are not their labels, any more than a diabetic is just a diabetic or an epileptic is just an epileptic. And you have to think of it in those terms because it IS the same thing. All a diagnosis does is condense a group of general symptoms ect into one or a couple of words, it is not that person as a whole.

Now I'm not going to say you're not going to have to deal with ignorance and stereotyping because that would be a lie. I'm pretty sure we've all dealt with it on one level or another. But you can help educate the ignorant while teaching your son (as you've discovered yourself) that he is much more than any mere diagnosis.

 

[flutterby]

"Labels" are diagnostic tools that help patients get the right treatment. My daughter, like a lot of the kids here, has more than one "label" (or, more accurately, diagnosis - diagnosis as we abbreviate it) and it wasn't until we could tease the various things out that we could find the right medication and therapy. With the correct diagnoses, and thus the correct medications and therapy, my daughter has made tremendous strides in a short amount of time.

And, as TeDo, said, it is absolutely illegal for the school to try to require you to medicate your son. They cannot deny his right to an education because of medication or lack of it. Send a request in writing via certified mail with return receipt for an evaluation for an IEP. There is a sample letter in the SpEd101 Archives.

 

[JoAnn1989]

Ya the school is just strongly recommending that I get him medicated is what I really mean. But as someone who was medicated at a young ah I don't want that for him. I know that there are better treatments and understanding of the symptoms of ADHD then there were when I was a kid but it's hard to know what I went throw and feel pushed in to doing the same to my son. Also the school is already unhappy with me since I am to bush take care of my 2 children my chronicly I'll husband taking in my younger sister and being the only one that's working to come to the school every week because my kinder gardener colored his duck the wrong color or wouldnt sto talking or playing outside.

 

[TeDo]

JoAnn, it is against the law for them to even do THAT much. Technically, they cannot even mention medicating him to you. Call them on it. When they mention medications, tell them they are breaking the law AND the it's your right as a parent to decide AND the it's their job to educate him with or without medication. Get that request for evaluation to them. Make them do THEIR job.

 

[hearts and roses]

Contact your state's Department of Education. They have an advocate department that can help you understand your rights under the law. You must educate yourself about what is appropriate and legal in your state. They may also be able to advocate for you at school meetings.

And please, just because your son has been labeled ADHD, it doesn't mean that all of his symptoms are related to that diagnosis. There could be more to it or it could be he's reacting to the way they are treating him. Sometimes low doses of medications are helpful for the child to actually learn along with behavioral or occupational therapy. There are many ways in which you/school can work together to help your son be the best student possible, even if he has limitations. Public school districts LOVE little cookie cutter kids who do everything the teacher tells them to according to the school schedule. While some level of conformity is just, if a child has special needs, those needs must be considered and he should be accomodated. Does he have any classification - is he entitled to Special Education or 504 status?

difficult child's fifth grade teacher mentioned medications to me ONCE. I asked him if he felt it was appropriate for him to diagnose my daughter and suggest medications for her? Did he know any of her other health issues? Was he aware of her background, allergies, etc? He just gawked at me. I then marched into the principals office and demanded a meeting. From there she was evaluated both through the school and again privately. They would NOT pick her up for Special Education, even though it was determined she had processing issues, tourette syndrome, Obsessive Compulsive Disorder (OCD), and of course the ever popular ADHD. We held back on medications, but it became apparent that SHE was suffering in her classes on an emotional and academic level. The low dose of medications along with therapy helped her for a while - then adolescence hit and that was another ballgame altogether.

Anyway, do your homework, get the information you need to advocate for your son within your legal rights. Hugs, this is not an easy path you're on. I'm sorry.