Facing Forward

August 2007 Special Sections

Never Lose Hope
Suzette Scheele has three children with mental health issues. Here, she recounts the journey with her oldest son, Matt.

I first realized that Matt was different when he was just a toddler. At home, he couldn’t sit still and engaged in repetitive behaviors such as flicking light switches on and off. At preschool he was aggressive towards other children, jumped off the tables, and preferred to play alone. Matt was two-and-a-half years old when I took my concerns to his pediatrician, but he thought his behavior was in the normal realm of child development and simply said “boys will be boys.” After a few visits and at my insistence, the pediatrician provided the name of a psychologist who evaluated Matt and gave him an ADHD diagnosis.

We sought help from mental health professionals who educated us about Matt’s disability and provided strategies to help our son. We did some behavior management, but it didn’t really work. Eventually, Matt was prescribed medication to treat his ADHD. He wasn’t aggressive while he took it, but after a few months it would lose its effectiveness. By the time Matt was five, the intensity of his aggression increased and he was placed in a psychiatric hospital for stabilization. For the next nine years, Matt spent time in and out of hospitals and treatment centers undergoing assessments and treatment. At age fourteen, a few years after my kids and I moved to Minnesota, Matt was diagnosed with bipolar disorder and Asperger’s Syndrome.

During this time, Matt attended school with an Individualized Education Program (IEP). At school he was extremely inflexible, became frustrated easily, and was rule-bound. He could not handle his emotions. The school did not know how to help Matt and did not seem willing to work with his disability. I contacted PACER and an advocate worked with the school and me to develop an IEP with appropriate services and accommodations. Today, Matt is like other seventeen year olds. He attends high school, is on the debate team, gets straight As, and is overall a great kid. He’s working on his driver’s license and hopes to attend college.

If you are concerned about your child’s mental health, find out what is happening at school. Document the frequency of the behavior, the intensity and duration. Raise your concerns to the child’s physician. Get your child comprehensively assessed. Once you receive a diagnosis, learn about your child’s disability. Make sure you take care of yourself, so that you’ll have the patience you need to help your child. And most of all, never give up hope.

Know Your Rights
When Beth Davis noticed that her daughter, Blythe, was having trouble concentrating and reading in second grade, she scheduled an assessment at Children’s Hospital in Minneapolis. Blythe, who was diagnosed with attention deficit disorder combined with impulsivity, is now seventeen and has a brother with pervasive developmental disorder.

The first thing I did after Blythe was diagnosed was become informed about special education. I learned about my kids’ right to an education, and I learned about my rights as a parent. When I went to school to find out what they could do to accommodate Blythe’s needs, they said they could not put her on an Individualized Education Program because she was academically performing up to par.

Because of what I had learned through reading and talking to staff at PACER, I knew she could have what’s called a 504 plan. A short time later, the school realized that Blythe could benefit and qualify for an IEP. Thanks to the adaptations in the IEP, Blythe was able to get longer test times, breaks during tests, and other accommodations.

I don’t have specific steps I can recommend all families follow. The actions you take will depend on the grade your child is in, the school district you live in, and what school your child attends. With both Blythe and her brother, the key for us was getting educated, then educating the schools about their diagnosis, making sure there were adequate accommodations being made to ensure their quality education. In time, we also educated our children about their disability, so they knew why they were doing what they were doing—and what they could do to help themselves.

Above all, our goal is always to make sure that our kids know that we love them. At school, Blythe wanted to be a well-behaved child, and so she would work hard to concentrate there, but when she came home, she was bouncing all over the house. She was never punished for being unruly because she was just trying to cope.

Blythe wants to go to college and study painting and drawing, two of her big talents. She has a job, a boyfriend, and gets A’s and B’s. And she embraces her ADD by speaking publicly about her diagnosis. We are our kids’ best advocates. We would like to believe they are learning to advocate for themselves—so they can be successful and strong on their own.

Embrace Your Child
When Joy Silberman’s daughter, Rachel, was in the fourth grade, her mother suspected that she was showing signs of something other than the ADHD  she was diagnosed with when she was six years old. Three years later, Rachel was diagnosed with bipolar disorder. Antipsychotic and mood-stabilizing medications have helped manage the illness, and Rachel, now eighteen, will soon go to college.

Educating teachers about mental health has always been a challenge and I think it will continue to be. For Rachel, I had to continually press home [to her teachers] the message that she is really not “just lazy,” that she can pull two all-nighters in a row and that teachers will not always know that they are dealing with a child who has not slept for two days. They don’t always know that when she is not listening, it is part of her disorder.

Things can be very different depending on your child’s diagnosis, age, and personality. What worked and still works for Rachel is structure. Quite honestly, we don’t move away from that structure because the minute we move away from it, things fall apart. One of the differences between ADHD and bipolar is the aggressiveness. Keeping her in a routine allows Rachel to know what to expect and to know what’s coming.

And I have to say something about parental guilt. It is unavoidable. This may sound unconventional, but in the beginning, I don’t think guilt is entirely counterproductive; it’s a natural step in managing what you are going through. In my opinion, sometimes it’s okay to accept your guilt. Because then you can step back from it and say: I did not purposely give my child this mental health disability. This is genetic. I will stand and take on this medical challenge and embrace my child.

Rachel graduated this past June. She will be heading to the College of St. Catherine in the fall, where she will be studying graphic design and advertising. Rachel’s story is a success at this juncture. But as I celebrate her accomplishments, I also remind myself that it is a continuous journey.