Do you consider your child to be mentally ill?

[Christy]

I recently joined NAMI and took a wonderful class called NAMI Basics designed for parents and caregivers of children with or at risk for developing a mental illness. It was a wonderful class with tons of information and support, like our forum only live and in person! The president of our local NAMI chapter asked me to help her come up with ideas to reach the parents of young children struggling with mental illness. I thought of some places that we could offer flyers like the psychiatrist/therapist offices, Mental Health Association, fostercare and adoption unit of DSS, school counselor's, etc... I then realized that there have been NAMI pamplets at our psychiatrists office the entire time that I've been taking difficult child. I've even read it a few times. Why hadn't I joined sooner? I realized that until recently, I did not consider difficult child to be mentally ill. Not that I was against the term, it is just that no one ever said it to me. difficult child had a behavior problem. The school uses the terms behaviorally challenged and emotionally disturbed but never said mentally ill. difficult child's diagnosis was ADHD for years despite the fact that he had a terrible reaction to stimulants and was being treated with bipolar medications. It wasn't until I needed the information on a form to help get services for difficult child that the psychiatrist officailly diagnoised bipolar disorder. Even at the psychiatric hospital, no one used the word mentally ill. It wasn't until I was absolutely overwhelmed by difficult child's behaviors and made a desperate call to the adoption unit of DSS for answers. They suggested I call 211 which got me in touch with the Mental Health Association. I got hooked up with some behavioral intervention programs offered by a program that serves the mentally ill population in our area. Duh, it hit me, difficult child was mentally ill. I never realized it despite the psychiatrist, therapist, psyciatric medications, and psychiatric hospital visits. I'm really not stupid, it's just that people used terms like behavioral issue, mood disorder, emotional problem and never said mentally ill. Because of this, I never went looking for help in this area sooner. Our school system refused to hand out copies of a booklet published by NAMI entitled Parents and Teacheres as Allies to appropriate students because they did not want to insinuate to parents that their child was mentally ill. Why is it a bad thing? In googling a list of metal illnessess I came up with the following:
Anxiety
Attention-Deficit/Hyperactivity Disorder
Bipolar Disorder
Borderline Personality Disorder
Dissociative Disorders
Dual Diagnosis and Integrated Treatment of Mental Illness and Substance Abuse Disorder
Eating Disorders
Major Depression
Obsessive-Compulsive Disorder (Obsessive Compulsive Disorder (OCD))
Panic Disorder
Post-Traumatic Stress Disorder
Schizoaffective Disorder
Schizophrenia
Seasonal Affective Disorder
Suicidal Ideation
Tourette's Syndrome

These conditions vary in degree or severity and I'm sure there are other conditions included in the term mental illness that are not listed above. Yet, when I thought of mentally ill, I thought of crazy. I thought metally ill people were not able to function in society. That identifying a mentally ill person was obvious by there outrageous behaviors. Now I realized that this is not the case and there are many mentally ill individuals that mange their illness and function very well. I still have trouble describing my son as mentally ill to family members because of the negative connotation of the term. I hope that in time, public awareness will help develop a more accurate portrayal of mental illness and parents wil be able to seek out the severices offed by NAMI and local mental health agencies without negative stigma.

Do you feel that your child is mentally ill?

Can you think of ways to reach parents in the local community struggling with difficult child?

Christy

 

[CrazyinVA]

I will say that this is why I fought to have my Youngest's IEP classification changed to "Other Health Impaired" (as the CABF recommends, by the way) rather than ED. Bipolar is a biologically-based mental illness, it's not an "emotional" problem. Her mood swings and anxiety had physical reasons behind them; the "ED" label screamed "behavior problem" and the teachers were less apt to deal with her appropriately.

I never had much issue with the term mentally ill... but I do think there's a huge stigma attached to it. I can tell you that neither of my children considers themselves mentally ill. It sounds too .. final. Perhaps it's simply not easy child these days.

 

[Christy]

Good point about the iep coding. A behavior problem is seen as something that can be corrected, yet if the behaviors stem from mental illness this is not the case. Yes, steps can be taken to help the internally and externally manage the behaviors but a teacher is more likely to personalize things and cast blame when seen as a behavior problem than if he/she realized the student suffered from a mental illness.

I guess the finality of the term is why it took so long to realize that my son was mentally ill. I kept thinking he'd get better. Yes he can get better but he will continue to struggle with mental illness. I have my blood sugars under control and I don't suffer any side effects of diabetes yet I know that I am still diabetic. It will always be there like my son's mental illness.

 

[compassion]

I like ill versus bad. Yes, I consider my difficult child ill. It keeps expectations more realistic.
It is interesting though because my son has ADD and I do not really consider that an illness, more a difference.
Compassion

 

[Josie]

I consider difficult child 2 to be mentally ill with her Obsessive Compulsive Disorder (OCD). Hers has been bad enough that it is easy to see it as a mental illness.

I also consider difficult child 1 to be mentally ill when she has been off from her girlfriend/CF diet. In that case, she can control it by not eating whatever it is she eats, but once she eats it, she is mentally ill and probably can't totally control herself.

 

[DammitJanet]

You have hit upon something that is a real problem with the world at large. People think that anyone with a mental illness should be in the corner blubbering and talking gibberish. We arent for the most part. The majority of mentally ill people are out there in society standing next to you in Walmart shopping for school supplies. We drive, we take care of our kids, we can work in some cases, and we can even run for Congress! I would lay good money that some of them have some disorders...lol.

 

[gcvmom]

It's all about perception, like everyone here has said. Mental Illness has a definitely negative connotation -- always has.

My difficult child 2 definitely has a mental illness. And when he was at his least stable, I DID call him in sick at school because he really was too sick to attend and I said as much to them.

And there are days when I really believe difficult child 1 has one as well -- not sure why I don't have that view all the time. See, even I am split!

Changing a national mindset is very, very hard. Until we get the backing from a household name celebrity, or the media or some other hugely influential source, then it's going to be a very long road towards getting acceptance from the community at large.

Maybe we start by using different language. Maybe we try the kinder, gentler route. Call it a brain disorder. Call it a neurochemical imbalance (that's a mouthful). Call it synaptic defect. Whatever gets the point across that it's NOT the patient's fault, it's NOT the parents' fault, and it's something that merits serious attention and treatment, regardless of age or economic status.

 

[mstang67chic]

I think you and CrazyinVA hit the nail on the head...Stigma. Even in this day and age, there is still a HUGE stigma attached to the term mentally ill. Most people think as you said....mentally ill people are "crazy", they can't function in society, they live in hospitals, group homes or on the streets.

But you are also right in the comparison to the diabetes. No matter what it's called, mental illness is still an illness just as diabetes is. It can be treated and controlled but it's still there. There are people here that are mentally ill but with the right treatments, you'd never know it unless they said something.

I think for what you are trying to do, your best bet may be simple rewording on the pamphlets or information being passed out. It may shock some parents and some may turn you away because of their denial but for the stigma to be stamped out, people need to be educated and aware of exactly what mental illness is comprised of. Maybe you could even work with NAMI (or the school even) to put together an informational/awareness event of some kind. Any wording though, I think should be somewhat subtle but decisive. (Hmmm....that sounds kind of counterproductive doesn't it?) Maybe, just as an example, something like what CrazyinVa said. "X (bipolar, ADHD, whatever) is a biologically based mental illness that can manifest itself in many ways including undesireable behaviors. With proper treatment however, these behaviors in school and at home can be minimized or controlled just as you would control the symptoms of other illnesses such as diabetes."

Maybe comparing it to more "socially acceptable" and understood illnesses such as diabetes or others, can help people understand that while something may be a mental illness, it's still simply an illness and not something to be ashamed of or kept secret.

I would also be carefull when referring to treatments. Yes, a lot of people require medications to function or be stable but not everyone does. There is also that attitude of how people and doctors just throw medications at kids/people to control behaviors instead of using other methods. Plus, if you are trying to reach parents who are either in denial or need eductated, I don't think telling them their kid needs medication should be the first thing they hear. It may or may not be the truth but they may need to ease into the idea. Know what I mean??

I do think that if you can reach other parents, it would be a good thing. Good luck!

 

[graceupongrace]

"X (bipolar, ADHD, whatever) is a biologically based mental illness that can manifest itself in many ways including undesireable behaviors. With proper treatment however, these behaviors in school and at home can be minimized or controlled just as you would control the symptoms of other illnesses such as diabetes."

What I really like about that description is that it makes it clear that the behavior is a symptom (or a result) of the illness.

We really face a sort of Catch-22. Because of the stigma associated with "mental illness," we avoid those words and our kids are seen as "bad." If we use the words "mental illness," they're seen as "crazy."

I know someone who uses the words "brain chemistry dysfunction," and I'm starting to like that description. It implies illness, or at least something that can't be helped, or something that parents didn't cause.

 

[miles2go]

1. Biologically-based -- what is the evidence? (I am not skeptical, I'd just like to know what it is.) I hear BiPolar (BP) has to do with dopamine imbalance (same neurotransmitter cocaine and methedrine increase during the "high") but presumably one can't check its level as easily as blood sugar? So what do we know?
2. Is describing BiPolar (BP) as "disorder" different than "illness"? Or is the difference between "disorder" and "disease" but "illness" includes both?

It would be nice if this syndrom got respectfully popularized by hollywood like autism, MPD (others?) were made into movies.

 

[JJJ]

Well, Kanga is definitely mentally ill.

Eeyore and Tigger -- I considered them more developmentally delayed.

And Piglet just has "ADHD".

 

[ShyChelle]

I am seeing more and more that he has a mental illness. I have to agree with stigma on both behavioral and mental problems. I haven't found many people who are my support in this. I have thought that if my child had cancer or some similar issue then people would feel compassion and would be more willing to reach out. Since he has a mental/behavioral issue they (society) seems to attach to that it is my problem, and that I must have had some hand in it for him to be this way. I was excited when I found this place. Perhaps educating society would be an awesome benefit. I don't know... I just wish that parents had more support for this.

 

[flutterby]

Yes.

Some people think that because there isn't a blood test for it, then it can't be a real illness. A high number of physical illnesses don't have a blood test for them and are diagnosis'd based solely on symptoms and/or ruling out other things. In fact, no blood test is 100% definitive for anything. And a high number of our so-called common illnesses aren't understood as to why they develop, how they progress in who, etc.

There is much, much more we don't know about medicine and the human body than we do know.

 

[gcvmom]

just google "biology of bipolar disorder

The fact that bipolar is highly heritable means it has a biological basis (as opposed to an environmental cause

 

[KTMom91]

To answer your question...yes, I do.

She is able to function fairly well as long as she is medication compliant. Lord only knows what will happen when she turns 19 (she will be 18 on Monday) and is no longer on our insurance.

I also consider her disorder to be biologically based.

 

[timer lady]

The tweedles both have a serious mental & emotional illness. I don't call them mentally ill anymore than I call them "RADishes" as some parents of attachment disordered children do. I tell others & myself that my children are kt & wm with mental/emotional illnesses, not unlike epilepsy or diabetes. I have to look at these diagnosis's in this way - just the way I operate.

Without the diagnosis of these disorder we would have no services to survive the devastation these same diagnosis's have brought into my home, my life.

While there is a stigma - more & more the term "mental illness" is earning a bit more respect. Some of the public are learning that the mentally ill are not blubbering morons; rather seriously ill in need of treatment.

Look at the homeless - how many are mentally ill? Sorry - I'll get off my soapbox.

 

[Christy]

Thanks everyone for weighing in. The stigma and the varied perceptions is one one of the reasons the NAMI Basics class is so helpful to struggling parents. It stresses that while many disorders have a genetic component, mental illness is no ones fault, medication is available but as a parent, you have the right to decided what is best, it goes over types of therapy, provides a great description of various disorders, and before I start to sound like an advertisement, I'll stop!

I wish the class was available and I had taken it 5 years ago. I really could have used the info as I began this journey. When I was asked to help get the word out about this class to others in our area that might benefit from the class, I realized that I didn't know that difficult child was mentally ill when he was younger and therefore did not know where to look for services. That got me thinking about how people might react to the term.

Just a thought and no judgments attached, many young children are diagnosed (many misdiagnosed) with ADHD. ADHD is a brain disorder and therefore a mental illness. All mental illnesses do not have the same level of severity. Understanding this would go a long way towards eliminating the stigma attached to the term mentally ill. Mental Illness is a medical disorder the same way asthma is, it just affects a different part of the body.

My son is also diagnosis'd with Pervasive Developmental Disorder (PDD)-not otherwise specified, a form of autism, and in looking for information and services available I realized that our county services are provided by the ARC (Association of Retarded Citizens). Autism is a developmental disability which in the past was called retardation. How many parents who have the autism ribbons on the their cars or dress their children in autism tee shirts so that others at the park will understand their behaviors would be doing the same thing if the term was retarded rather than autistic. It wouldn't change any of the wonderful things or the special needs of their child but it would change the public opinion. It is great that so many have come forward to educate society about autism, I wish the same were true of mental illness.

 

[Fran]

Truthfully, I think mental illness is an antiquated term. What does it really mean in our society? It's a catch all for illogical behavior or behavior that is not explainable. I hope it is discontinued.

I think my son thinks differently and has some serious weaknesses that are outside the spectrum of average. I think it is biological in origin but requires a multi pronged approach to make difficult child into a functioning member of society. He isn['t going to be "cured" whatever that means but he will have to learn to work within society's rules to have a full life.

 

[DammitJanet]

On the poster I have created for my new Parents Supporting Parents, I dont use the words Mentally Ill. Maybe I should. I use emotional or behavioral problems. I am asking parents if their kids have emotional or behavioral problems and if so then my support group is the place for them to come to get support. Maybe if I could get a larger poster board I could throw the terms around on the board...like ADHD, Bipolar, Depression, etc. That would be a good idea.

 

[totoro]

I do consider K to be Mentally Ill. But along with that she has learning differences and special ways of thinking and feeling.
For me it is very difficult to explain to someone what is going on with my child.
Almost everyone knows or has an idea what Autism and ADHD are.

If you say my child has Bipolar Disorder and she is 8, they just don't get it. Even saying Sensory Integration Disorder (SID)/sensory processing disorder (SPD) most have no clue.
Anxiety... most people don't think an 8yo can have anxiety, the reply is what does and 8 y.o. have to be anxious about?
Sometimes I will say she has a neurological based brain disorder, like a seizure of the brain. Which is true... I will say this to older people with grown children who I know will never get it and do not "believe" in Early Onset Bi-Polar (EOBP).
But they get seizures.

We have discussed this with our therapist and she agrees that this is a hard one for parents of young Mentally Ill kids, she has been doing this all over the world for 20+ years.

I am finding over time that I can explain bits and pieces, like K has some speech issues, or needs adaptive P.E. for this reason or needs help with writing--- because of this sometimes she gets frustrated.

If we get close to someone eventually here then I will tell them. I have told the few parents I have met 2 who has an Autistic daughter's and the other whose son has both.

This is at her School, in public I am a firm believer in being an Advocate, with myself and children who have Mental Illness. It is misunderstood and still not believed by a lot of professionals.
I don't think kids should be pushed onto medications first thing, but I think they need to be looked at and the parents need to be listened to.
I wish NAMI could be in more places. Ours here is not that great, I am opting to go to a CHADD meeting now because they are the best run and funded in our area for Mental Illness.

There are so many homeless here who are Mentally Ill.
Something needs to be changed about how people view Mental Illness. Especially for our kids, I want all kids with challenges to receive the help they need regardless of the diagnosis.
And the parents to not have to feel ashamed to talk about it.