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The Necessity of Respite for Caregivers

crashedcoupleWhile many people with mental health diagnoses are able to self-advocate, some are not. For those people, the burden falls on healthcare providers and caregivers who are already overworked and under compensated for their efforts. We need strong, caring advocates for adults and children like mine, who struggle with mental illness and need adequate mental health related services for all who are in need of them.

Imagine life with a thirteen-year-old who throws daily tantrums like a two-year-old, has periods where he talks (even when alone) every waking moment, and that those waking moments are numerous because he cannot fall or stay asleep.  He endured sexual abuse, witnessed and was the victim of physical abuse, and inherited genetically and was environmentally molded into his own mental illness.

I live this life, along with my husband.  Our son, in our home for nearly three and a half years, is diagnosed with post-traumatic stress disorder (PTSD), oppositional defiant disorder (ODD), attention deficit hyperactive disorder (ADHD), reactive attachment disorder (RAD), traits of Asperger’s Syndrome, and mood disorder NOS (not otherwise specified) {because psychiatrists don’t want to label a child with bipolar disorder, which my child’s biological mother had, which I am convinced that he has}.  Ours was his 13th placement in his 5+ years in DCF custody.

A brilliant child who struggles in school because of his mood instability, he is currently in a substantially separate classroom for children with emotional and behavioral problems.  Along with TAP (Total Achievement Program), this has been a godsend for helping him to learn social skills and appropriate ways to channel his anger toward others.   When other students’ antics cost him his privilege time, or other group members don’t follow the teacher’s rules, his ire comes out.  Have no doubt, he feels completely justified in breaking rules or pulling shenanigans of his own, “but that’s different.”

Last summer, our son (5’6”, 165 pounds) became violently angry and shoved me.  This could have ended in serious injury or death for me as we were at the top of our stairs.  He was admitted the next day to a CBAT (community based acute treatment) facility.  He was discharged after the first few days of school and immediately had trouble at school.  After a few weeks, he became violent at school and was admitted to a different CBAT. The first CBAT would not readmit him, saying he just wasn’t trying to implement his coping skills.  The second CBAT did a much better job ascertaining his issues and treating him.  They also worked to get him a partial hospitalization placement to ease him back into the routine of school work.  He is now almost back to last year’s level of performance when he made honors each term.

Our biggest struggle is respite time for my husband and me to recoup and enjoy being a couple.  We made a conscious decision to bring this child into our home, knowing his past and the struggles we would face (to the degree that it is possible to know before actually experiencing it).  My family is out of state, and my husband’s family members are not well-suited to handle our son’s emotions.  He needs to stay with people who have cared for children with mental and behavioral challenges.  We don’t have a large network of such people from whom to choose.  We have re-established ties with a former foster family whose attempt to adopt our son did not work out, and most months they take him 1-2 nights per month.  In our three and a half years with him, we have had maybe twenty-five nights “off.”  If you are a parent yourself, you can probably relate to needing time alone with your spouse to reconnect.  Now imagine that your child is also suffering from mental illness and the exponential effect that has on your downtime needs.

The Department of Mental Health provided respite for families like ours until fairly recently but at this time cannot help.  DMH also has sponsored camperships for children with mental health issues but I have been told this year that may not be possible due to budget cuts.  I can tell you that my husband and I need our child to go to an appropriate, mental health related, camp equipped to handle him, for the well-being and continued integrity of our family.  Summers are difficult for our son due to having less structured time.  Yet the local DMH director said that not even kids in the DMH caseload (which my son does not fall into because of the blessing/curse that he has MassHealth) may get campership help, much less “non DMH kids.”  We adopted this child from state care and getting appropriate help for him through DMH has been an ongoing nightmare.

Citizens with mental health problems are not a constituency that is able to advocate for themselves.  That burden falls on health care providers and caregivers who are already overworked and undercompensated for their efforts.  We need caring advocates for adults and children like mine who struggle with mental illness and need mental health related services for those who cannot help themselves.

About the author: Holly C. and her husband live on the South Shore with their son, six cats, and a bunny (all adopted).  She works in the health care field in an administrative role.  The blog is from a handout she distributed during the annual Legislative Breakfast on Mental Health on March 12, 2015.

That’s what our families look like

Girl arguingLast week a mother was describing how differently her family was viewed by two very separate people — a clinician and a child welfare worker. She said, to a room of parents whose children have behavioral health needs, “You know how our families can look from the outside to other people?” Everyone nodded. We knew. The mother then went on to recount that when her child and family had in-home therapy, the clinician saw mental health problems. When DCF was asked to provide voluntary services, they came in looking for the ways the parents could have “caused” the mental health problems.

Many of us realize early on that having a diagnosis for our child can open doors. Insurance requires one for billing and special education plans usually do too (even though that is not supposed to be true). There is something to be said for that feeling when we can point to a diagnosis and say, “Aha! I knew it was something like this. I am not a bad, or incompetent, or seeing-things-that-aren’t-really there parent. What is going on has a name and a description and a set of treatments.” We feel relieved for a little while.

But then a new confusion sets in. The doctors and therapists and teachers and the in-home workers all have a diferent idea of what a diagnosis means. And they often have a different idea of how you should parent when your child has a certain diagnosis. Let’s say your child has been diagnosed with bipolar disorder. You run to the internet and get a descripition. A lot of it fits but some of it seems off the mark. You know your son or daughter has extreme moods but you wonder if not being able to focus is part of it. What about her defiance? What’s the best approach — setting limits, being flexible, a combination? And once you’ve figured all that out, how come what works on Saturday doesn’t do the trick on Monday? We can end up looking like inconsistent, ineffective and confused parents. From the outside looking in, that’s what people see.

Social attitutes and stigma about children’s mental health needs contribute to all this. Some people (okay more than some) blame parents for their child’s behavior, moods and inability to manage things better.

It’s not just the children or teen but the family as a whole who are often subjected to stigma. Parents may also experience increased stress, strain, and social isolation as they care for their child while attempting to buffer themselves and their child from the negative attitudes and perceptions of others (Mukolo, Heflinger, & Wallston, 2010). Some parents may stop taking their child to public places for fear that their child’s emotional or behavioral problems will be triggered and result in negative reactions and judgments. Others may feel they have to educate whoever is interested. Still others tough it out and let the chips fall where they may. But we are all aware of outside judgements and interpretations.

A few years ago, I took two parents with me to talk about our children and mental health issues on a local radio station. One was a dad from the north shore who had overheard a teacher talking about his child in a local grocery store. The teacher was describing his son’s problems and behavior which had included a psychiatric hospitalization. She saw it as a discipline problem. I had my own stories to tell as did the other parent. Afterward we spoke with the radio host, who herself had experienced depression. “I’m curious,” she said. “You all have your own experiences and I’d like to get your opinion.” She told us about her friend, who had an elementary school son with bipolar. She thought her friend would parent differently; instead she let a lot of things go at bedtime. She wasn’t stern, she negotiated, she was careful not to anger her son. The radio host couldn’t figure it out. From the outside, this looked like a tentative, unconfident parent. To her, it didn’t seem like “normal” parenting. The other parents and I looked at each other. “When you have a child like that,” we all said. “You do what works, which is often not what you thought you’d do.” We explained that you adjust and manuever constantly. You create a “new normal.”

Some of us worry that we play a part in our child’s problems. We blame themselves and feel that we should have “seen it sooner” or wonder if our child’s mental health problems are a result of our failure in some way. This leaves us feeling vulnerable. If that child welfare worker or clinician pokes at that vulnerability, we may look like a deer in headlights, frozen in our feelings.

This is what our families look like. We are constantly reinventing parenting. We rarely know what’s going to work before we try it and we are constantly looking for things that do work. We know that chaos is often right around the corner and we find things to fend it off. Whether it looks smart and creative or inconsistent and poorly planned depends on your point of view. It also depends on your training. What parents know is that it’s pretty unilikely that our children will learn by just absorbing the rules or make strides from rigid discipline. And what works one day or week, may not work the next.

How PPAL has Helped Me

leaveshouseI know that Youth MOVE and PPAL are specified as a non-therapeutic group. That is because clinicians are not allowed to attend the groups or meetings. There is no therapy involved, yet they have helped me through a lot. They gave me a place to go when times were tough. I looked forward to going to the Youth Groups and attending the conference each year. That was possibly the only thing that kept me looking forward.

I’ve been home schooled for the past 2 years of my life because of issues with bullying. I remember being so afraid the first time Lydia and my sister Bella, also an intern, talked me into going to one of the youth groups. I hadn’t been close to kids around my age for awhile. I remember saying to Lydia that I was too scared and shy to be there.  Their exact words to me were, “Oh good, you’ll fit right in!” So with that I went into that youth room scared out of my mind but came out a completely different person.
I started to get excited to go to group each week! If I missed one on my own accord I’d feel bad – like my week wasn’t completed. It gave me a sense of hope in myself. I thought I’d never get to go into a place with other teens and come out alive. Without PPAL I may never had been able to fully go to a place surrounded by people and actually feel safe.

I started my internship at the age of 13.  I was glad I could be a help to the staff there. Lydia, Meri, Britt, Beth, Chandra, Pawel and others are all like a family to me. I’d gladly spend more time at the office than sitting around at home! I did simple things such as fold brochures, set up the room for group, make copies, clean up after group, and yet I was always thanked with so much enthusiasm.  It was nice to finally have something to do and I actually felt useful for the first time in a long while.

The main way PPAL has helped me is the support they have given me. I was able to pick myself back up thanks to the support I got from PPAL and Youth M.O.V.E.  I never could’ve accomplished so much without knowing that they were right there cheering me on.  Also, another important fact is they provided a place to go to get out of my house.  So to those whom it may concern, I do not go to the group for the pizza. I don’t even really like pizza. I go to see the family I have made there.

Ally C is an 8th grade student from Worcester, MA. She has been writing since a young age. Some of her hobbies include writing poetry and drawing. This is her first blog for PPAL.