A View from My Shoes

A View from My Shoes
Coordinated Services: A Parent's Perspective
by Lisa C. Faine
Reprinted from, Legislative Gazette, March 27 2000

I am a PROUD parent of a child with mental health issues. My son is involved in multiple systems with multiple diagnoses. I can best describe him as a very high maintenance child with lofty continuous needs.

When I was asked to share my thoughts in a newspaper article, all I could think of was, "What do I say?" After all the readers have probably already seen the movie, "Twister." For those of you who have seen the movie, my life as the parent of an emotionally impaired child resembles an F-5, a description of the most intensive and destructive type of tornado.

Like a tornado-prone community, a family with an emotionally impaired child needs to always be prepared for a crisis in order to minimize the disruption and preserve the quality of family life.

A trip to Wal-mart can be an adventure with an emotionally challenged child. For example, if an emotionally impaired child asks for a toy or item and the parent says no, it can digress into a very animated tantrum, drawing the attention of curious and judging on-lookers. On-lookers assume you are a failure as a parent and should have better control. Sometimes they actually say very cruel remarks in a stage whisper. Other times you just get the LOOK! So, do you get the toy or risk a possible public restraint? That little voice in your head may be telling the parent in my vignette to ignore the child and walk away. In reality while NO attention my redirect most "adjusted" children, an emotionally impaired child will just up the ante to force the parent's attention, thus causing a spectacle.

There is an old cliché "You never have problems with neighbors or other parents until you have children." That is true ten-fold if you have a child with emotional impairments. Because it is a disability you cannot touch or feel-- unlike a physical disability-- people conclude your child is "bad". We often get phone calls from irate parents chastising our children for their behavior. It is not unusual for people to discourage or forbid their children from playing with ours. Our children are the ones excluded from birthday parties. Our children aren’t invited to join in the neighborhood baseball game. When the usual kid arguments break out, our children are often the scapegoats. For whether they started the problem, were a willing participant, or an innocent bystander, they are blamed. After all, they are the ones yelling the loudest, exhibiting the least conflict resolution skills, coping poorly and ultimately drawing the most negative attention.
My former job as Director of Advancement and faculty member at a local well-regarded private school was quite demanding. Interruptions from my son's school were routine. Often I was called out of important meetings to go to his school, because my child was in crisis or I was needed to consult on the phone. Coordinating services for an emotionally impaired child is a job in itself requiring an overwhelming amount of personal calls during regular business hours, as routinely providers are not available after 5 pm.
I made the arduous decision to leave my job in education to obtain a nursing degree. At the time, my husband and I agreed it was crucial in order to better advocate for our child and have an adaptable schedule for our family. Working outside the home was imperative, we needed two incomes.

Research supports the fact that emotionally impaired children cross all cultural, racial, and economic boundaries. However, many times the system treats me if I am uneducated, have limited cognitive abilities, am underemployed and have poor parenting skills. The system assumes that they are a better quasi parent than I, and can therefore make better decisions about my child's present and future needs.
Many times, I felt compelled to defend my ability as a parent, by explaining my son has a mental health diagnosis, so we would not be viewed as a "failure." I can tell you many times, I have felt oddly vindicated my a provider, neighbor, fellow parent or acquaintance when they learned my child was disabled and therefore they "listened" to me quite differently.

Although I knew raising our son would be difficult and challenging, it was implied that there was help out in the community for the difficult times. In reality, it is not always the case. Unfortunately, children are one of the most rapidly growing areas of mental health. I'd like to quote Patricia Vacarolis from her book Foundations of Psychiatric Nursing, "Two of three children with serious emotional illnesses in the United States are not receiving the services they need."

We need in-home community based crisis services, which are more cost effective and less shameful and traumatic. It allows parent and provider partners not to ship our children to far off hospitals, thus fragmenting families. Home-based crisis services allow more options. Removing a child from the home is not always the answer. Individualized crisis plans, coupled with vital in-home crisis services and essential programs, will keep our children in our communities where they belong and close to their families.

People often ask me why we did not put my son in placement. After all, they say, it just seems like it is too much. It an be at times. It can challenge every fiber of my parenting skills. But you need to realize, our love for our children, and my love for my son is just as strong as yours. My son's vast talents such as his athleticism, sensitivity, humor and creativity impress me. I can tell you for the first time last year, my son was able to join an organized recreational activity and complete the scheduled season. Previous to this year, we were always asked to leave those types of activities, because even with my support, my son's needs were too draining and intense. Regardless, his needs require attention and will not dissolve because he is out of my home, custody and care.

We now receive WRAP-around services which are an integrated system of care through Families United Network in Albany County. This flexible process allows my son's providers to creatively initiate, adjust, modify and customize services as my child's needs change.
The process is strength-based and all providers meet regularly to discuss my son's (and our family's) progress. In this process, I am no longer the "gatekeeper" trying to keep all of my son's numerous providers "on the same page". This philosophy has allowed me to keep my child at home and out of placement, while meeting his needs in a qualitative manner. This ideology not only more directly meets the child's needs and those of the family, but also does so at a reduced cost.

I'd like to close with a brief poem which is both my son's and my daily inspiration. It is titled, "The Kids Who Are Different" by Digby Wolfe.

The Kids Who Are Different
Here's to the kids who are different,
The kids who don't always get A's,
The ones who have ears
twice the size of their peers,
And noses that go on for days.

Here's to the kids who are different,
The ones they call crazy or dumb,
The kids who don't fit
with the guts and the grit,
Who dance to a different drum.

Here's to the kids who are different,
The ones with the mischievous streak,
For when they have grown
as history has shown,
It's their difference that makes them unique.