Parents ride roller-coaster diagnosing mental illness

"Hold on to your bootstraps. You are in for a long ride."

That is what Mary Anne says she heard from one doctor during the long and arduous process of finding an accurate diagnosis for her youngest daughter.

She describes childhood with her was like riding a roller coaster. Traveling the highs and lows of mental illness and all that goes with finding the right diagnosis can be challenging and exhausting.

Mary Anne's daughter had anything but a typical childhood. From the very beginning her daughter never slept. By 2 years old her speech was delayed but she had good nonverbal communication and she was hitting all the age-appropriate milestones. Soon after that, she stopped cooperating with her speech pathologist and communication became more difficult and the screaming, pinching, hitting, kicking and throwing intensified. Doctors diagnosed her with bipolar disorder.

By junior high, that diagnosis was reversed. According to Mary Anne, "The psychiatrist told us they had been treating the symptoms not the diagnosis and that her daughter's mania was the result of outside stimuli and her inability to cope. She was just trying to get the real world to meet her needs." The new diagnosis included sensory issues and attention deficit disorder.

Patty was on that same diagnosis roller coaster with her son, Randy. As a child, Randy was diagnosed with bipolar disorder. He was not adjusting well, not very social and between the ages of 3 and 4 years old, he was experiencing anxiety attacks. As Randy got older, there were some social issues that developed. But it wasn't until he was 18 years old that they discovered he had an undetected stroke at birth.

Along with his newly discovered brain injury, Randy also was diagnosed with mood disorder, impulse control issues and a lower ability to function.

"We were constantly being told that Randy was choosing his challenging behavior. We were told he was lazy. We knew that wasn't right," shares Patty. "This has taken a long time to unravel. That delayed diagnosis means that his recovery was severely delayed," says Patty.

Sharon's situation is multiplied by two. Her sons, David, 16, and Mark, 14, were both adopted at birth. According to Sharon, "We did have many incorrect diagnoses before finally finding the ones we think are correct. For both boys, attention deficit/hyperactivity disorder was the initial diagnosis. It took years to get to diagnoses that captured all of their symptoms and not just distractibility/impulsivity. For Mark it also took several years before he could begin to articulate what was really going on in his head."

Though both are living with mental health issues, the similarities start and stop there.

David's diagnosis includes conduct disorder, disruptive mood dysregulation disorder, anxiety and depression. David has always had some level of anger issues especially surrounding his birth mother. He felt rejected and as if he never belonged with his adoptive family. Even early on his behavior was difficult at home and at school. It became more aggressive around sixth grade and as he got older, the trouble progressed into police involvement.

Mark's diagnosis includes schizoaffective disorder, bipolar disorder and depressive variation. At 14, Mark is constantly being barraged by ghost friends. The term "friend" does not mean they are warm and fuzzy. When Mark's mood is dark, so are his "friends." According to Sharon, "When his mood goes bad, so do his 'friends.' Mark has even seen them dripping in blood. At 14, Mark is dealing with stuff no adult should deal with."

Heather also has two children dealing with mental health issues. If not for Heather advocating for her 8-year-old son, Trey, he may not have the right diagnosis or an IEP in school. Early on, Trey was diagnosed with sensory integration issues and attention deficit/hyperactivity disorder. He received speech therapy but occupational therapy was not recommended as part of his early intervention. Going into school, Heather had to push to get an IEP, which would continue the therapies that Trey needs.

Her 10-year-old daughter Paige was diagnosed with general anxiety disorder. Heather knew that early therapy can make a huge difference. By getting that diagnosis correct early, Paige was able to get the help she needed from the very beginning.

Though vastly different situations, all of these moms are fierce advocates for their children. Their stories give us just a small glimpse of what parents of children with mental illness struggle with just to get an accurate diagnosis. The ups and downs can be mild or extreme. The challenges can be subtle or insurmountable.

What have they learned and want to share?

• Fight for the proper diagnosis.

You know your child best. If you don't think it is correct, seek out another opinion until you find the one that fits. It is imperative because a delayed diagnosis means delayed recovery. Early treatment means the start of recovery and is the best way to help your child.

• Find a support system that works for you.

It may be friends, family or a support group specifically for parents. They can offer resources, information, advice, or just the ability to listen and understand. You need to know that you are not the only one going through this and that someone else may be able to help you navigate the ups and downs. They can give you the strength you need to get through the days ahead.

• Be your child's biggest advocate.

No one knows your child better and no one can fight for your child better than you.

Since his proper diagnosis, Randy has been able to get the appropriate treatment and therapy. He has 13 years of treatment toward recovery. Patty is not worrying as much as she used to.

Heather's daughter is learning to manage her generalized anxiety. Heather is hopeful that both Paige and Trey have a future rich with relationships, their own families and being a productive members of society.

David and Mark's story is still unfolding. Sharon's biggest fear is that "one child will be in jail and one dead."

Mary Anne attributes much of her daughter's recovery to the intervention of a wilderness program and therapeutic boarding school.

Her daughter, now 19 years old, has not one but two jobs now. She has been a nanny for 1½ years, has been promoted to house manager with that family and works a second job on top of that. When meeting her, no one sees her disability. For the first time in a long time, Mary Anne feels as if she may just be getting off that roller coaster.

• Find help:

If you are struggling with your child's diagnosis or even if he or she does not yet have a diagnosis, the National Alliance on Mental Illness (NAMI) can help. They provide resources, referrals and support groups for families.

Their staff can answer questions and point you in the right direction. If you are in DuPage County you can find more information at www.namidupage.org. NAMI has chapters all over the nation. To find one in your area, visit www.nami.org.

• Sherry Manschot is the marketing/public relations manager at Western DuPage Special Recreation Association. She leads a parent network of special needs families at WDSRA. Manschot can be contacted at sherrym@wdsra.com. More information about WDSRA can be found at wdsra.com.

NAMI DuPage (www.namidupage.org)

A mental illness is a medical condition that disrupts a person's thinking, feeling, mood, ability to relate to others, and daily functioning. Just as diabetes is a disorder of the pancreas, mental illnesses are brain disorders that often result in a diminished capacity for coping with the ordinary demands of life. No one is at fault for mental illnesses, although certain life experiences may exacerbate an underlying disorder not previously recognized.

Mental illnesses can affect persons of any age, race, religion or income. Mental illnesses are not the result of personal weakness, lack of character, or poor upbringing. Most people diagnosed with a serious mental illness can succeed in life with an individualized treatment plan and live in recovery.

Serious mental illnesses include but are not limited to: major depression, schizophrenia, bipolar disorder, obsessive-compulsive disorder, panic disorder, several anxiety disorders, posttraumatic stress disorder, and borderline personality disorders.