One Family’s ‘Traumatic’ Struggle For Mental Health Care

By Deborah Becker
Jan 31, 2011, 6:25 AM
64 Comments

Massachusetts has more children’s mental health providers than most other states, routinely screens most children for mental health issues, and has Rosie D., the 2006 lawsuit that mandates adequate mental health services for kids on public health insurance. But several challenges remain.

In the first report of our week-long series, “Are The Kids All Right?,” we visit a Sudbury family that has been grappling with a teen’s mental health problems for years.

Will and Carol Cadogan, at their Sudbury home (Jesse Costa/WBUR)

SUDBURY, Mass. — The peaceful sound of wind chimes at the front door of the Cadogans’ well-appointed Sudbury home is deceiving. The family has been struggling to deal with the mental health needs of one of the children.

“It’s kinda like having a tornado in your house,” said Carol Cadogan, laughing.

She laughs often to try to deflect from the seriousness of her complicated story. She has boxes and file cabinets full of notes and records about the years of testing, medications, doctors and programs for now-17-year-old Will, the second of her five children.

Carol says she’s gotten a different diagnosis from almost every doctor they’ve seen over the years. She reads some of the litany of opinions:

“Generalized anxiety disorder with panic, major depressive disorder, ADHD combined type, oppositional defiant disorder — he’s not that. He’s a tough kid. It’s very difficult to pigeonhole him.”

Psychiatric issues and substance abuse are usually treated separately, even though 85 percent of teens with substance abuse problems also have psychiatric issues.

But Will’s story started out rather simply when he was in preschool and began taking Ritalin for attention deficit hyperactivity disorder (ADHD).

“He couldn’t comply with the restrictions of school, not that he couldn’t, but he was having trouble,” Carol said. “Things like sitting still in circle time, he could be disruptive. Although it’s been around for a long time and it’s safe, they don’t eat. At one point they wouldn’t prescribe it because he wasn’t gaining weight. We had to stuff him with ice cream so he could get his Ritalin prescription. He was off and on and I tried ever drug available.”

And Will, a clean-cut, handsome young man, eagerly shares his experiences with the mental health system.

“The doctors were just prescribing me so much medicine I couldn’t even function, honestly,” he said. “That was just a terrible experience.”

“I was over-medicating him at times, with the best of intentions,” his mother said. “It’s all trial-and-error with these drugs and everyone reacts differently. But you have to find out, so the finding out process can be just awful, can be traumatic.”

Finding a doctor was also traumatic for them. Even though Massachusetts has more child psychiatrists than most other states, there are only 7,000 in the entire country. So Carol’s experience is described as common. She found that many doctors weren’t taking new patients, or had long waiting lists, or would only take cash — usually thousands of dollars.

Eventually, they found a doctor and medication that worked — for a while. Because with high school came drug use and everything fell apart.

“It was like watching someone fall off a cliff.”

“I started using drugs and hanging out with older kids.”

“I found little straws in his room and I was freaked out. I found a spoon with a burn mark underneath. He was running drugs on his cell phone, this kid who has no organizational abilities. He had his cell phone organized for the kid who liked marijuana, the kids who wanted Oxycontin. These were scary drugs. We’re not talking a little marijuana. I was afraid I was gonna find him in his room not breathing.”

“I had problems with addiction and (I’m) basically recovering from addiction.”

“I kept taking him to therapists. Everything was chaotic. I didn’t know what he was doing. I knew he wasn’t doing the right things and I couldn’t have any control.”

When Carol tried to gain control with more intensive treatment, she found out the hard way that psychiatric issues and substance abuse are usually treated separately. That’s even though about 85 percent of teens with substance abuse problems also have psychiatric issues. And many doctors will not prescribe psychiatric drugs to teen substance abusers because of uncertainty about how the drugs might interact.

So when Carol started researching residential treatment programs, she asked Will’s therapist about less expensive alternatives to some of the private therapeutic programs.

“His therapist said, ‘You can send him through the state,’ and I asked him, ‘Well, this is what’s available, do you know anything about it?’ This is the Harvard Ph.D. therapist I was paying thousands of dollars to see him twice a week. He said, ‘My colleague has a patient there and I’m sure it’s fine.’ Well, it wasn’t fine.”

That program turned out to be for juvenile criminal offenders.

“I think I was 15,” Will said. “When I got there I already knew I didn’t belong. Everyone else who was there was there cause it was a step-down program from being in jail, from juvenile lock-up. It’s strange when you’re a kid from the suburbs. They say, ‘I’m from Dartmouth Blue Meadows project.’ ‘Oh, I’m from Sudbury.’ I ended up getting kicked out. I was getting assaulted and I started fighting kids back.”

But Will and his mom agree that the worst experience for both of them has been in the hospital.

“The worst was when I was in youth psychiatrics,” Will said. “Once they restrain you in youth psychiatrics if you’re acting too violently, they take syringes full of Thorazine … so you’re on your stomach, they pull down your pants and they stick a needle in your muscle in your a– and they shoot the drug. It’s a sedative. It basically passes you out for a bit.”

Will was hospitalized four times before his senior year of high school.

“They would just leave kids lying in bed,” Will added. “That was the most terrible experience, seeing little kids scream while they put syringes up their a–. It’s disgusting. It’s horrible.”

Carol felt that the adults weren’t treated much better.

“Once when we were checking him in and we were very emotional, an administrator barged into the room yelling, ‘Where’s your credit card information?’ Have a little empathy, a little tact.

“These doctors are so willy-nilly to say, ‘Oh, just put him in the hospital.’ Well that didn’t help.”

But there have been some things that were effective for them. Carol says they had helpful doctors, and a six-week wilderness program made a big difference. But that program and five months at a therapeutic boarding school cost more than $50,000. Now Carol is again looking for another doctor and putting together a new patchwork of services for Will.

Will, then about 3, and Carol Cadogan at Goose Rocks Beach in Kennebunkport, Maine. (Courtesy)

So here they are, some 13 years after the first suggestion of a mental health problem, with neither a clear diagnosis nor a treatment plan as Will is about to become a legal adult.

“I’m always gonna worry about him,” Carol said. “You change your perspective. I want him to be happy, law-abiding and self-supporting. That’s all ”

Will, who is now home, hopes to graduate next year from an alternative public high school and go on to college. He sums up his experience in a cynical but positive way:

“There definitely are problems with the system. A lot of it, I would say, is human error. I know there’s a lot of stuff with doctors and insurance companies and sometimes it’s more about money than it is treatment. It seems sometimes there’s foul play. I think I did benefit overall from it.”

At this point, it’s difficult to know how much Will did benefit. There are few national — let alone statewide — statistics on children’s mental health. The estimate suggests 300,000 kids in Massachusetts have a diagnosable mental health problem. One recent study says the prevalence of severe emotional disorders in adolescents is significantly higher than common physical problems like asthma and diabetes.

But what we don’t know from the numbers are stories like the Cadogans’: How many families are not getting the appropriate treatment, or medication? How many families can’t find a doctor or make sense of often-conflicting diagnoses? These are questions we’ll explore throughout our series.

WBUR Series: Are The Kids All Right?

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Alaraujo1

That was a terrific piece and I’m glad it used an upper middle class family as an example; all too often poor disenfranchised people/parents are blamed by the system for their child’s mental illness (MI). The problems and difficulties discussed are pervasive throughout our state, a so-called leader in MI treatment. These problems are pervasive throughout the age spectrum and are not limited to just children. Sometimes I think children are slightly more fortunate than their older counterparts because the damage caused by such atrocious past care cannot easily be reversed with “newer” treatment modalities in older adults. It also points out how important family support is necessary to maintain an aim toward MI recovery, to the best of one’s ability. When one is let loose on the world while being sick, alone, and untreated; nothing good can happen from there, save a miracle.

Joanne

When one is let loose on the world while being sick. alone and untreated, and untreated; something good can happen from this, and Yes, I believe in miracles…so I guess it was a miracle??? that happen!
When my insurance ran out and I was told I had to leave a private psych hospital back in the 80′s, I did become a victim of the streets of an unknown city to me, but of course the elements taught me quickly how to “fit in”, I was used and abused by all, but I got through it…and now in the year 2011 I work in the mental health field to teach recovery and inspire hope to all I come in contact with on a daily basis. I am proud of my job, and I love my life and brings me to tears that I once, more than once tried to take it. Until I learned that it was not my fault and never should be afraid to talk and listen to others no matter how much they may laugh at me. Someday…we will overcome the stigma and shame and maybe I will just spend the rest of my next half century educating others who I call my peers. Anything is possible and Recovery is Real!,

Mberrymangordon

Hi Joanne, my daughter has mental illness and I have been trying in everyway to help her. what advice do you have for a mother like myself that’s seeking the best help for her? mbg

Sallap

I’m sorry to say this. I’ve listened to this report twice now and not heard one iota of blame cast on either the child or the parent by the child or the parent. Even when the parent blithely states he (her child) had no organization skills but was able to organize his drug sales on a phone. I know this kid has problems but some, I’m saying some, may be of his and his parents making.

http://www.facebook.com/profile.php?id=1309404281 Sarah Louise

Sallap, I don’t see blame being cast anywhere. Why are we so obsessed with the idea of blame? Do you even have kids–teenaged kids?

This article highlights a broken mental health system. As a step parent to a child who is going through a similar thing, I can tell you this: There is plenty of guilt going around the family. There is plenty of blame being had. Why do you need to dwell on it–what business is it of yours, except for your feeling of moral superiority? This article is about a broken system, which we can fix if we wanted to, but we don’t. We have tried and tried and tried to solve the problem, but are frustrated by the lack of care offered and the attitude of people like you who wish to cast blame, but offer no solution. Mental illness is not something that you can ‘blame’ on someone. That attitude–the vilifying of the mentally ill and blaming the mentally ill for their problems–is a major obstacle to getting the mentally ill help.

One cannot help being mentally ill any more than one cannot help having a club foot.

So sure, some are of their own making. Everyone makes mistakes and damages themselves or their children. Even you. Why would it make you feel better to hear this?

Tracy

excellant come back to this Sarah. Mental health is a huge problem for all with blame and guilt everywhere. Most people who have not had the oportunity to “live it” have no true idea of what it truely entails or EVER will. I believe Most (unfortunately) people are very closed minded to the cause and affect of what mental illnes is.
Thank you for speaking up so eloquently. You did good for your step child and for all the others out there who deal with these issues. I commend you.
http://twitter.com/murmur55 murmur55

Parental abuse is not a benign condition and it needs to be understood and prevented. Sometimes parents are to blame. Obtain early assessments with respect to family dynamics to prevent symptoms, including psychosis.

http://www.facebook.com/profile.php?id=1309404281 Sarah Louise

Do you think she abused her son? Are you implying I abuse my stepson? The answer to both of these are resounding ‘NOs.’ Parental abuse is not a benign condition, to be sure, but statistically speaking it doesn’t account for most of the cases of mental illness.

I am offended that you would even go there. Really, this is the problem: a child has a mental illness, and the general public immediately jumps on the ‘it must be the parents’ fault’ bandwagon. It makes things so much harder for the parent who is struggling to save their child.

Claraisabelle

Sarah Louise, I agree with Tracy. I have a mentally ill teenage daughter. I am well educated and used to be fairly well off. But, I have spent over $150,00o on care for my daughter, because the insurance company will not pay for services that are critical to helping her become a functioning member of society. I am not looking for “free” care, I have never abused my daughter, I have done everything I can to provide a loving, safe, and stable environment for her. Blaming the parents is SO wrong and so offensive. Would you blame the parents if a child had cancer or a heart condition? It is tragic that so many people are ignorant about mental illness. Yes, this is an ILLNESS. It’s not made up and it is life altering. Do you know hard it is to see your child in deep despair, not able to get out of bed or go to school, who is cutting herself because she has so much emotional pain? My daughter never did drugs or alcohol and she is currently not taking any prescription drugs, because her condition is not helped by them (but, believe me, like most parents, we went through a whole host of trial and error with her psychopharmacologist before we determined that, in her case, meds were not going to help). No parent wants to medicate their child, but in some cases, it is a lifesaver and is necessary. Again, would you withhold chemo from a child with cancer? Would you deny a child surgery to repair her heart? Needless to say, I am completely frustrated by uninformed people who jump to conclusions about mental illness. It is truly sad and it makes it hard for our children to get a fair shot because there is so much bias against it.
Claraisabelle

Sarah Louise, I agree with Tracy. I have a mentally ill teenage daughter. I am well educated and used to be fairly well off. But, I have spent over $150,00o on care for my daughter, because the insurance company will not pay for services that are critical to helping her become a functioning member of society. I am not looking for “free” care, I have never abused my daughter, I have done everything I can to provide a loving, safe, and stable environment for her. Blaming the parents is SO wrong and so offensive. Would you blame the parents if a child had cancer or a heart condition? It is tragic that so many people are ignorant about mental illness. Yes, this is an ILLNESS. It’s not made up and it is life altering. Do you know hard it is to see your child in deep despair, not able to get out of bed or go to school, who is cutting herself because she has so much emotional pain? My daughter never did drugs or alcohol and she is currently not taking any prescription drugs, because her condition is not helped by them (but, believe me, like most parents, we went through a whole host of trial and error with her psychopharmacologist before we determined that, in her case, meds were not going to help). No parent wants to medicate their child, but in some cases, it is a lifesaver and is necessary. Again, would you withhold chemo from a child with cancer? Would you deny a child surgery to repair her heart? Needless to say, I am completely frustrated by uninformed people who jump to conclusions about mental illness. It is truly sad and it makes it hard for our children to get a fair shot because there is so much bias against it.
Claraisabelle

Sarah, just to be clear, I am venting about the folks who made negative comments towards you.
Claraisabelle

Sarah, just to be clear, I am venting about the folks who made negative comments towards you.
http://www.facebook.com/profile.php?id=1309404281 Sarah Louise

Amen! Keep up your good work, Clara, because as their parents we do understand, we can help, and sometimes, we are all our kids have. :)
http://twitter.com/murmur55 murmur55

I’m not commenting on this case in particular; I’m countering the NAMI “product line” where parental and family dynamics have no influence. All cases need a full psychodynamic evaluation as well as a biological one, especially in children.

JDfoot

Sallap: You are not alone in thinking about blame, or responsibility for one’s own life. Blaming the parents is just as old as mental illness itself. In this case the boy is extremely lucky to have a caring parent who has stuck with him through thick and thin. These are very difficult problems and there is no guaranteed solution (for ANYONE!!) to the task of getting a good life, let alone for someone with mental illness. The drug addiction and the mental illness need to be treated at the same time, as one will interfere with any progress on the other. This is a tall order, and in most cases mental illness never goes away, it merely submits, for now, to a degree of control that makes life bearable. There is no quick fix. For a slow fix that offers a lot of promise, look into the program Family to Family administered by NAMI of Massachusetts. NAMI is the National Alliance on Mental Illness, namimass.org.

http://twitter.com/murmur55 murmur55

NAMI is supported by the drug companies. They do a poor job of educating people in mental illness. In particular, they deny family dynamics that can cause all sorts of psychiatric symptoms. Some parents are directly at fault for their children’s mental illnesses, including psychosis. They also support very malignant psychiatrists in the state, some of whom are mentally ill and have actively interfered with patient access to care. NAMI has NOT been an effective advocate for real health reform. Our present system is a disgrace, full of incompetent providers, waste, well-known fraud and patient abuse.

Ebanana55

What a heart-wrenching story. What about the families who havc neither the money, nor the skills to advocate for their children? The movement to educate families about mental health is on, and must include every member of the healthcare community, especially families, they are the real experts. Part of the problem is that rising costs often force good doctors to become like fast food servers with a drive-thru mentality toward treatment. We need reform in healthcare costs, particularly medications.
It is critical that citizens begin to insist on some kind of regulation of the drug companies who are sucking our healthcare system dry! Let your legislator know that drug makers are legally profiteering on the pain and misery of the masses. As the new healthcare policy comes into effect, they are rubbing their greedy palms together in gleeful anticipation. Let’s stop this now!
JH2

They put him on methamphetamines at age 5 (Ritalin) and then wonder why he turns to “drugs” in high school.

Sitting still behind a desk while one person up front talks to the room for 14 years is not what some men were designed for. It will drive some of us crazy – quickly!

All the prescription drugs in the world won’t change that. When you hammer a square peg into a round hole it shatters. I was barely able to suffer through our system of compulsory mass schooling, even though I’ve always tested in the upper 1-2% on intelligence tests.

The public school system literally left me unable to think clearly until I reached age 24-25 and had enough time on my own to learn a process of self-determination and self-control that worked for my life.

Maybe we should face the fact that the current American suburban culture of raising children is toxic to mental health.

If you want to try a different way for your kids, google “John Taylor Gatto” and start reading.
Richard Morse

Excellent report. My experiences with mental health have been mixed as well, both as a consumer and a worker in the system. Bottom line?… never relinquish control of care and treatment to the system. In most cases, the patient is in no condition to represent themselves. Family must stay involved through monitoring, keeping records, and questioning; be an advocate for the patient. Mental health providers want patients with advocates. If a provider does not welcome family involvement (and some don’t), find another provider. Stay involved.
interested listener

I work in the legal system representing both adults and children who have mental illness. Imagine how hard (basically impossible) it is for these children and families to get the help they need. They don’t even know what questions to ask to be pointed in the right direction. They have few to no skills for self advocacy. My heart goes out to all of these families, whether they are of means or not, but those who are poor have it the toughest.

helpless parents

INTERESTED LISTENER: Good points…and firsthand experience.

What helpful questions would you suggest parents ask?

How inept that you must be an “expert” just to get proper direction. And if you’re poor on top!

Rodman012

Sounds like the title of this article should be “One Family’s ‘Traumatic’ Struggle For FREE Mental Health Care”

http://www.facebook.com/profile.php?id=1309404281 Sarah Louise

Have you ever tried to get intensive long term mental health treatment? My insurance won’t cover all he needs–not even half. So, yes, perhaps it should be called this, but is this a bad thing? Even in private treatment there are problems abound. If I weren’t mired in it, I wouldn’t know this, so I don’t expect you to.

I work a full time job, a part time job, and my partner works two jobs as well. I have decent insurance. Many parents have been pushed into poverty trying to take care of their children in the best way possible.

So, what’s your point? Long term mental health care threatens to push us into bankruptcy. Is this right?

C Parent35

I was surprised at the excerpt used to promote the show. It seemed extremely sensationalistic and very atypical of WBUR to choose to air the clip of the boy describing his experience receiving mental health treatment: “The worst was when I was in youth psychiatrics,” Will said. “Once they restrain you in youth psychiatrics if you’re acting too violently, they take syringes full of Thorazine … so you’re on your stomach, they pull down your pants and they stick a needle in your muscle in your a– and they shoot the drug. It’s a sedative. It basically passes you out for a bit.” Both my son and I have had to listen to this promotional clip several times while driving, and we both voiced our discomfort with it. I am surprised that WBUR did not choose a less graphic clip to promote a very serious issue. The clip used had the ring of reality tv rather than the serious journalism I expect from WBUR.
Tracy

I have so much I could say and then again so much I should not say. What I will say is this: Great story to open up the eyes of those out there willing to see and learn about Mental Illness. I am greatful to have been sent this link and will forward it to those I know who will benefit from it. I am also very happy to see this is a week long thing and WILL “tune” in for each.
I commend MOM and SON for what they did here. What a huge thing this must have been for the both of them to come out and tell all about their lif and experiences. Such courage especially Will’s part to be brave enough to share and not care who see’s this.
TO THE FAMILY: I soo wish you Carol and Will and the rest of your family the best with your efforts and new found relief and hope. It is a huge struggle for all of whom are immediately involved with someone with a mental illness. I am a single parent that has a 13 year old son with multiple diagnosed Mental Illness’s and know this road traveled.
I offer a resource of help that you may or may not know of locally that excepts insurance. Wayside youth and family services. THey have made a huge differance in my life for both my son and I. Also, Will may want to check out TEMPO (for young adults), I have heard great things and it’s free. Both resources are in Framingham, ma. Again, my best and I hope my tid bit resource is helpful.
Seabreeze

Did anyone really have to read beyond: “he was in preschool and began taking Ritalin for ADHD,” are you kidding me? And the reason was he didn’t like to sit in circle time??? Wow, I can’t believe doctors are telling concerned parents to pump up their toddlers with powerful and dangerous drugs so that they sit still for a boring preschool teacher! How unspeakably tragic. And now he has “mental health issues?” The inconveniently active little toddlers whose parents can’t afford the “health care” and drugs are the lucky ones. Obscene over-medication of children is the real child abuse epidemic of our day.
Philip Hurzeler

The report mentioned that there are few child psychiatrists available and that proper treatment unfortunately often includes much trial-and-error.

Let me mention that Advanced Practice and Clinical Specialist Nurse Practitioners can be a big help (ok, ok I have an ax to grind, my wife is a Clinical Specialist although not in pediatrics). Even though very highly specialized these nurses cost less, follow their patients more closely, and spend more time with them than doctors who are overburdened. They also, by law in Massachusetts at least, have access to psychiatrist MD’s for consultation. They are an underutilized resource.

Melissa Barrup

Excellent point Philip! I am an FNP student, graduating in a few months. We had a presentation by an Psych NP who was working with adolescents in juvenile detention. Most of them were on multiple medications and poorly managed. Through her first few years, she was able to get 80% of them off of their medications and doing much better. It just takes time and a LOT of effort, and NPs/APRNs/CNSs are just the ones to meet the challenge.

commenter88

Wow. So the kid couldn’t still story in story time in pre-school so they put him on psychostimulants. Poor kid. I’m wondering if the diagnosis of mental illness was not made too hastily given that they were dealing with a kid who was drugged up almost since birth (pre-school is, what, age 3 or 4?) and has no sense of what reality is like.

It’s ridiculous how easy teachers and mental health professionals are these days to slap mental health diagnoses on children, teens and adults and just as easy to load them up with piles of psychotropic drugs to the point where the “patient” doesn’t know what healthy or real is. NO wonder the this kid turned to drugs in high school. Altered states of awareness were all he’d known since age 3.
Ca Livingston

I wonder how much research was done to verify what this family was saying about their experience.
Jack

I’d like to hear more about the six week wilderness program; the one thing that made a big difference.

Rose

I agree Jack – we need to find out what works.

Would Will or Carol please respond to Jack’s inquiry about the six-week wilderness program that made a difference?

PS Happy belated birthday if you’re our Jack!
snowbound

Jack, there are many wilderness programs out there. Some reputable, some not. Most of them cost a fortune and are not covered by insurance. The wilderness program we used was based in the wilds of West Virginia. As part of the therapy, the staff taught the kids wilderness skills (emergency responder). They endured a rigorous backpacking experience – sleeping under individual plastic tarps and preparing their own food. (It was NOT a privileged Outward Bound-type experience, though I’m sure some readers will characterize it as such.) Each child was assigned to a therapist and there were many, many hours spent in communication with that person and peers. There was also a fair amount of journaling. Perhaps the most powerful aspect of this program was having intense parental workshops at the end of weeks 2 and 4. By bringing kids and parents together as a group there was tremendous support and a broader understanding of the challenges each person and family faced. It certainly wasn’t a miracle cure, but it taught our family a new way of communicating which helped us to travel an 18 month journey that included therapeutic boarding school. If you are interested in pursuing this avenue I would recommend a book to you: “What Now?” by Dr. Paul Case. It is a starting point to understanding some of the options and formats. Also finding an educational consultant (much the same as a college consultant) to parse your options and find a program that is the right fit for your child is critical. Also note that once a child becomes a legal adult, most programs will no longer accept them.

Claraisabelle

Snowbound, good information. My daughter was in a program for 9 weeks in the mountains of Georgia and she was blessed to have Dr. Paul Case (who wrote the book “What Now?”) as her wilderness therapist. This amazing program started her on a path to healing that is still continuing. It’s been tough and heartbreaking and eye-opening, but I would highly recommend a wilderness program and I wish more kids could experience it (yes, it’s expensive and not reimbursed by insurance, although sometimes they will reimburse part of the actual individual therapy time if you get a detailed bill from the program). She is now in a residential treatment program, but is due to come home soon and start attending a therapeutic day program. If it weren’t for the wilderness program, I don’t know where we would be. Her hospitalization and stay at McLean did not help at all – they are really only focused on medicating and getting the kids out of the door as soon as possible. What she really needed and is now getting in the RTC, is intensive individual, group, family, and recreational therapy.

wilderness

I had a son in a Wilderness Program last year. He was 8 weeks in Georgia. He is a great kid, bright, wide range of learning / emotional issues, finishing High school now in a Therapeutic Boarding school. It’s still not a guarantee. However, if you have a child who’s ability to make safe decisions for his/herself is so compromised they are seriously putting themselves at risk (we can’t be there 24 hours a day), it can be a life saving consideration. I am a single parent and of course, I could not afford any of this. But one day, a switch was simply flipped and I realized I couldn’t afford not to do it. I maxed out a couple of credit cards and borrowed from my home over the past year, so I’m fortunate I even had those options. Yes, some programs will itemize the therapeutic expenses, and if you have not already USED all of your mental health benefits for that year (which we almost had) some insurances will reimburse. The programs can also provide you with tax information, which can be submitted as well. I benefited from this. One expense you should be aware of, is you need an “education Consultant” to get you into these programs. That will cost money as well…but if it’s needed…don’t let it stop you. Take a look. DO YOUR RESEARCH on these programs. This is not a boot camp. Groups are usually set up by type of issues (ie substance & age) and you want the right group and right therapist for your child. That is where a good and experienced Consultant can help with the placement for you child. You STILL have to advocate the entire way. The therapist in Wilderness will be in contact with you weekly, for your own family therapy. It is a business, like any other, so keep your eyes open. But my son has told me “It saved my life..”. There is still a lot of work/life ahead of him. But don’t be afraid to look. (I will also say, many programs recommend taking a child out of the home, in the middle of the night..so they do not “run away” to avoid going to Wilderness. This may be needed for some, but I felt my son would go w/ me. I was right. I simply arranged for flights, and on the way to school one day..told him we were going to Logan, not school.. He was angry at first, but then settled, and I believe had some relief. He told me he was not totally surprised. I flew him to Georgia.I went there at the end to bring him back. He appreciated I had that faith in him. But..there are kids who couldn’t do it that way).
Look at different websites. This program in Georgia was 2nd Nature. I couldn’t speak more highly of it. (They also have a program for young adults..addressing the kids over 18) But there are many run by “Aspen” group, which are also highly regarded. Going into a program like this, and then returning your child to the very same environment, may not work. Perhaps it would. You have to think big picture. Good luck.

snowbound

Your experience sounds very familiar. With our child we did have to resort to having a “Transport Service” come in the middle of the night. It was without a doubt the most awful decision we had to make as parents. But, like you, we had realized that the most important thing we could do as parents was to ensure that our child got to a treatment program. Now, two and a half years later, we have found that we have a far richer relationship with our child than ever before. Learning to truly listen and communicate without criticism is one of the most powerful tools we gained. I wish you the best of luck with your son. It is a long road. Take care of yourself, too.

wow.

this kid should be diagnosed with an axis II disorder once he turns 18….. Manipulation/Spoiled Brat Disorder. this story speaks A LOT about what everyone else did wrong but never once does this kid take responsibility for any of his actions. he has made some poor mistakes and has probably manipulated or attempted to manipulate A LOT of people in the mental health field. maybe the reason he still doesn’t have a serious diagnosis is because he doesn’t have an Axis 1 disorder. he was probably seeing tons of different doctors because he was trying to get xanax or valium or adderal or oxycontin so he could sell it to his buddies… and then when mom caught him high on xanax he could just blame the “system”. it’s pretty interesting that a kid who has a lot of complaints to make about people overmedicating him was selling oxycontin to kids at the same time…i wonder how many people HE overmedicated….this kid has been manipulating the system to get what he wants since day one. yes, he probably has some things he needs to talk about in therapy, but he’s not going to accomplish anything until his mother realizes that this kid is a MANIPULATOR. Massachusetts definitely could do a lot of things better when it comes to mental health with our youth. Will, however, is the antithesis of the problem…..this is an example of a kid who manipulated his mother, doctors, and now NPR listeners into thinking that nothing has ever been his fault…..i feel bad for this kid for many reasons….but the biggest is that his mother is so oblivious to what has been or is still going on.

Guest

You DEFINITELY are right, because if you read one article, or listen to an 8-minute piece on a person’s life, then you should be granted the authority to make a blanket statement on their personality as a whole. “wow.” – why don’t you go find a forum where you can take out your anger with other anonymous, blaspheming internet scum bags like yourself.
Paul

wow. what an angry, ignorant, sad, sad, uncompassionate person you must be. I pray you don’t have children or work with anywhere where you have authority over anyone else’s.
Guester3

Well, I’m not sure if a pre-schooler can manipulate his parents into diagnosing him with ADHD and prescribing brain altering drugs for him. But otherwise, your post, though blunt, is accurate. This kid’s entire family suffers from a situation we’re seeing all too commonly today. Kid from upper middle class (or higher) family, doesn’t fit the expected mold. Maybe he’s fidgety in preschool or a little too “artistic” for the parent’s tastes. How terrible! He’s fidgety and disturbing the other kids! Let’s drug him so he’ll fall into line.

Parents rather than actually dealing with this challenge though discipline and teaching, accept the all-too-hastily offered diagnoses of some mental disease and its accompanying offer of a prescription drug cure. Because this is all so more palatable than admitting that your kid might be just different. The nice label of a disease is so much more acceptable.

And then we’re off to the races. Much to the parents’ dismay, the drugs don’t work. Of course they don’t. Three-year-olds generally don’t do well on amphetamines. So now, let’s try more drugs, different diagnoses, different treatment centers. Luckily, the family is wealthy so they can afford all of this. But none of it works. It’s just a lifetime of drugs on top of drugs, first happily prescribed by doctors, then the kid starts medicating himself to keep up. Of course, nothing makes anything better, it just makes it worse. It goes on for years, as the parents accept that their child is mentally ill and the child, now nearly a man, is forced to take no responsibility for himself. After all, he’s ill.

All of this. because a three-year old couldn’t sit still in pre-school and no one wanted to be bothered to step back and think about why he wasn’t able to handle pre-school. Maybe he was just too young for the structure of school.

http://www.facebook.com/profile.php?id=1309404281 Sarah Louise

Nice blanket statements there. I have a mentally ill stepson. I discipline him. I teach him. He is mentally ill, and in fact the mental illness seems maternally linked (his mother has it as well). He’s different, sure. And that’s okay. But he’s not thriving, and I do my best to help him gain a foothold in this world. Then some armchair physician comes by–like you and the poster above–and tells me I am a fool for believing in his mental illness, and further that I am not doing enough to help him because I don’t discipline and teach him.

You’re wrong, friend. And you know very little, unless you’ve lived with it. I am the expert here, not you. I do know what’s going on.

Guester3

I’m sorry you are having a struggle with your stepson. However, my comment was not about your family or your stepson. I don’t know anything about you or your stepson. My comment was specifically about the family profiled and interviewed in this story and the facts presented in regard to this case.

http://www.facebook.com/profile.php?id=1309404281 Sarah Louise

Again, it’s this attitude that makes getting help for mentally ill children so difficult. Your ignorance is astounding.

Doug

To wow – spoken clearly by someone who either has no children or was somehow blessed with perfect kids and hasn’t a clue of what it is like to deal with a kid like this. I wont even bother to try to explain because you are clearly a self centered egotistical pathetic moron and thank fully you don’t have a kid like this because if you did , the child would probably have killed himself long before you figured out how powerless you are to help him. I have one – I’ve lived it for 4 years now and it is a hell to which you will never understand – so go ahead and keep blaming the kid, the parent – because you must be so perfect yourself and if your kids are perfect – if you even have them – I am sure it is all because of the incredible parenting you must do that has made them so perfect.
http://www.chrisranjana.com software company

Surely its a tough time to have a kid with psychiatric illness at home. Also this particular kid has had multiple associated mental illness, it would have been like having something worse than a tornado at home. The parents would have had great stress and turmoil in getting the right doctor and treatment for this boy. At last they have together crossed the battle and the boy seems to be stable now. In fact his mother is to be appreciated for taking so much time and pain in being with the kid and to have brought him towards recovery.

http://www.chrisranjana.com
Teresa Iannone

This family is so brave .This is what being a mother is all about . I wish you all peace

Terese
Maureen

I cried while reading this…My son is in a ‘residential treatment’ program and our experience has been identical to this family. My son has been diagnosed (since the age of 3 with Hyperactivity, ADHD, sensory integration dysfunction, learing disabilities and now of couse ‘mood’ disorder….
I am looking at a 5 ft file cabinet of private assessments…progress (lack of) reports, restraint reports, 7 years of failed MCAS reports…I could go on and on, DMH has denied him and now as a last resort, I am filling our paperwork for DDS (used to be DMR)…
Exhausting/Depressing..
Still, like Will…I have a fantastic child needing a fantastic enviroment…

Claraisabelle

Maureen, so sorry to hear about your struggles. I share your pain and wish you and your family the best.

Concerned

A red flag to me is the history of having multiple different diagnoses given by different medical care providers. Something indicates that the young man did not fully fit the criteria of any diagnosis. Nothing is said in this article about the child’s neurological development (when did he speak, walk, read, etc..), nor his IQ or the presence of any issues such as dyslexia or other learning disorders. Does he have strong academic skills that are not necessarily displayed in a classroom?

I mention this because of the young man’s clear ability to articulate the answers to questions in the article. He is not a dumb kid, and in fact I wonder if he is a misdiagnosed gifted one. Very bright kids are sometimes misdiagnosed due to their refusal to comply with arbitrary rules (circle time is a classic), and they are given many psychoactive drugs to keep them quiet (Ritalin leads the pack), leading to much the same sad story-line. All these drugs have a potential of adversely affecting the developing brain when given in childhood.

Of course, one can both be very bright and have a severe mental illness (as well as a learning disorder).
Been there, now out

Will is obviously bright and articulate, and I hope he finds his way in college. My son spent his teens in and out of school (including therapeutic day and residential) with a patchwork of diagnoses (centered on some type of depression). Many caring psychiatrists and psychologists tried to help. Medications never did anything but give him side effects, such as weight gain. It got to the point where doctors hoped he’d respond to a medication, and that response would confirm a diagnosis! Although he still feels all is not right with him, he’s been off medication since age 16, managed to graduate from a good public school, and is now a year away from graduating from a highly regarded college. One thing I definitely learned (as the Cadogans found) is that most mental health professionals know nothing about the therapeutic school system–and any anecdotal information they do have is likely to be years out of date. It’s essential to do your own research.

Claraisabelle

You are absolutely correct. As a veteran parent of dealing with wilderness programs, treatment centers, etc. etc., I wish there were some way to let parents who are just starting this journey know that meds and hospitalization are not the only options. When my daughter first started spiraling downhill, I knew nothing about the myriad of services out there and I trusted the docs to prescribe meds that didn’t work and had terrible side effects for her. I trusted the docs when they told me that she should be hospitalized in a lock-down facility and when they said she should transfer to McLean. While these were probably necessary steps at the time, I didn’t know that there were a lot of other approaches and, for sure, the mental health professionals we were seeing (Harvard educated, etc.) didn’t know anything about them either. Thank goodness we found a miracle educational consultant who specializes in services for children with mental illness and thank goodness we could afford it. My daughter has now been through a 9-week wilderness program and almost 18 months in a residential treatment center. It has often been heartbreaking and I miss her terribly, but it is saving her life. She will soon be home and attending a therapeutic day school and I have high hopes for her success and happiness. As “Been there now out” said, DO YOUR RESEARCH. Don’t only rely on referrals from your therapist or doctor. Unfortunately, they do not know about these other approaches.

Jlshea

A new residential treatment program called THE LANDING at McLean Hospital in Belmont, MA, opened this past October. The program serves individuals, adolescents through age 19, with dual-diagnosis and substance abuse issues just like Will’s. Click here for more information about it. http://www.mclean.harvard.edu/patient/child/landing.php

guest

There is also a fairly new adolescent program at Mass. General… Dr. Tim Wilens is involved with it. He is a wonderful resource who specializes in pediatric and adolescent psych. (treating kids with dual diagnosis) I have heard him speak and he really does get it…. I have a lot of hope for Will…… it’s all about getting honest with self….. sounds like he’s beginning to do that…. also, there are so many teens out there who have struggled on the same road and have turned it around.. it is easier to walk a sober and drug free path with others, rather than alone… no one really knows about the “loss,” or the “lonliness” that ensues as a result of addiction unless you’ve traveled that road and made similar choices. The healing in recovery is a wonderful gift. We are very fortunate to be living in this area…. so many resources available. Best of Luck Will and family! you can do this!

Suzanne

My heart goes out to any family struggling with mental illness. There are no easy answers, and I can tell you as a practitioner, it’s just as frustrating for us when treatment doesn’t work the way we think it will. And we all have the extensive training (and the student loan bills) to feel like we know what will work!
The one part of the story I did take exception to was the characterization of the other youth who had all spent time in juvenile detention, and thereby labeling the program as ineffective because it was for “delinquents.” I worked in a juvenile detention center, and I can tell you this: the boy in the story possessed and sold drugs, which is a crime, and likely a more serious one that some of his counterparts who had spent time in lockup had committed. There but by the grace of God (and likely geography and race) that he hadn’t been there himself. It unnecessarily stigmitized the youth who have been locked up, many of whom also were likely struggling with mental illness, and those from poorer areas were more likely to undiagnosed, misdiagnosed and/or never received treatment for those issues.
hope

I’m sorry you and your son were offended by WBUR’s radio clip. I understand it’s difficult to hear, especially for your son. I’m sure had you known it would be so graphic you would not have tuned in with him present.

But, please imagine what it would be like to have YOUR son placed in a hospital; shot up with thorazine, strapped to a bed, having little if any access to fresh air for weeks at a time…… This is the HARD reality of our current mental health system. Parents go to the”profesionals” seeking help for their children and this is what our society has to offer. Why?? Because as of yet, mental illness is not recognized as an “illness”. I applaud WBUR for shining a little light on the horror some children and their families are experiencing. We need to start talking about these harsh realities and stop sugar coating it. It’s not pretty. Serious journalism, for a serious problem!

Blame it on bad parenting, blame it on pesticides, blame it on too much sugar. The end result is children feeling suicidal, depressed, hopeless acting out in violence on others or themselves. They need help. Shame on any of you for blaming a parent for seeking help – in most cases it’s not a failure of the parent, it’s a failure in the system. What would you have a parent do instead; passively sit by and watch their children slowly fade away or worse – die?
Drashley

How about a non-medication approach of individual and family psychotherapy. Pills do not Replace Skills. Try the ADD & ADHD Answer Book: Professional Answers to the Top 275 Questions Parents Ask by Susan Ashley, Ph.D>
Suzi911

i am a mother of a 16 yr old son who has had many of these issues. we have both done the meds and the no-meds route, so i feel for both of these mothers, but one thing stands out in this coverage: the one boy was DEALING drugs. the only reason he hadnt been in lockup is because he wasnt put there by the criminal justice system. i have to wonder why he thinks he didnt belong there: he hadnt been in lockup, but he had obviously done things that under different life circumstances (i have to think race and class here) would have landed him there.
isnt there a story here? the rich white kid ends up medicated and the poorer, colored kids end up in jail? arent there statistics there that could be illuminating? the hardest part of being a mom with a ‘different’ kid is learning when to let him take the hard knocks that his behavior brings on him,and when to shield him because he doesnt understand. for me, once his actions endanger other people, it’s time for some tough love.
Jo

While I am sympathetic to the plight of Will and his mom, I found ironic and arrogant that they (and your reporter?) did not see himself in the young people he encountered, who he deemed were criminals. I guess if you live in Sudbury and sell drugs, you are not a criminal.
guest

Firstly, I applaud Will and the Cadogan family for coming forward with this story. I think that their honesty in sharing the good, the bad and the ugly will provide many families out there with comfort as they attempt to figure out what’s happening with their children.

As a professional in the child mental health field, I think that too often children do get a “revolving door” of diagnoses. Often this is due to the fact that most mental illnesses are difficult to diagnose at an early age and many may look alike, until age and development reveal what’s really going on. That being said, it is VERY frustrating for a family to be left feeling as though their questions are unanswered.

I would however like to comment on the Cadogan’s description of Will’s inpatient care. While some hospital settings continue to use physical and chemical restraints on children, it is generally for their safety and the safety of the other children. This being said, there are places, such as Cambridge Hospital where they use a restraint-free model and provide children and their families with an alternative experience.

I hope that the Cadogan’s are able to find the right balance of treatment and support for Will and that he goes on to become a healthy, happy and productive individual.
radio listener

I think it is very scary that not only do we want to brush mental illness under the rug, the way we sweep is with psychotropic drugs. Giving drugs like that to a toddler? Why? There are conflicting diagnosis with children because they are just children… whose brains are developing and growing and learning. I can sympathize with the idea that one’s child is being disruptive, acting out of order at inappropriate times, etc. and how that can make a parent feel. Regardless of the situation, a doctor should not be making these black and white diagnosis with children so young… and they certainly should not be doling out drugs to blanket the problem. Our quest for normalcy and the constant defining of everyone’s diseases is making a very sick, dependent, and unsustainable nation.
-from an anxious/depressed/carnivorous/radio-listening/human
guest

There is also a fairly new adolescent program at Mass. General… Dr. Tim Wilens is involved with it. He is a wonderful resource who specializes in pediatric and adolescent psych. (treating kids with dual diagnosis) I have heard him speak and he really does get it…. I have a lot of hope for Will…… it’s all about getting honest with self….. sounds like he’s beginning to do that…. also, there are so many teens out there who have struggled on the same road and have turned it around.. it is easier to walk a sober and drug free path with others, rather than alone… no one really knows about the “loss,” or the “lonliness” that ensues as a result of addiction unless you’ve traveled that road and made similar choices. The healing in recovery is a wonderful gift. We are very fortunate to be living in this area…. so many resources available. Best of Luck Will and family! you can do this!
Theresa Casey

I am the grandmother who has been the main care giver for a young man with mental illness. He will be 18 March 23rd. He also has never been properly diagnoused and it is very hard to not worry about his future. Unlike Carol I was unable to keep him home with me, like Carol I am a recovering addict and needed treatment for both my addiction and my own mental health issues. B’s mother but him the care of DDS so with my own issues it was difficult to get permission for B to even come for a visit with me. B experienced a lot of what Will experienced. It is a very sad thing that in order to help our young future adults that we have to put them institutiona that do not help them but in many cases make matters worse. I commend you Carol for the way you stood by your son and watched over him like the Angel that you are. I wish that my daughter could have been there for B as you have been for Will. May both of you be Blessed.
Cindyloswald

I am one to completely understand what this family is going though.My son will be 14 in a couple months,and since he was 4 he has been diagnosed with quite a few mental disabilities,and taken quite a few different meds over the years,he is currently hospitalized ,and the diagnosis had gone back this time to ADHD,his IQ score overall was 61,I purchased a home in a small town and now I am selling everything and heading to Fla where I have family.I tried to ask his therepist if we could get a group together,parents and kids to do outings and support one another…ha,she asked if I wanted to take “parenting classes”.I just thought it would be beneficial to parents and children,not to mention,maybe fun for the children.I still may in our new town,I love the wildlife idea,but do not have funds,and i am sure many others don’t either,maybe get a group going and We take the kids camping and trailing,It just may help,we all know that we can’t always count on therepist and psycologist so why not band together,learn from one another’s experiences and have fun and make friends that we can relate to…..Just a brain-storm idea :)
Morgan

I don’t know if anyone who knows will reads this but if they do- I’d love to know if he’s ok. this sounds stupid- no, it is stupid- but I went on a NOLS trip with him and kept in touch for a few months and then occasionally after that but I can’t seem to contact him anymore…. I just googled him and found this. If you know where I could get in contact with him please reply to this post. (clearly not with contact info- I guess if someone replies I can just try to figure it out from there.)