Tag Archives: parent

New Year’s letter to my support group

January 2nd, 2012

For many of us, the end of one year and start of another is a time to evaluate our life and to identify things we want to change. Maybe we have made resolutions such as, “This year I am going to stick to that diet!”  These resolutions can be hard to keep, as our very demanding lives compete for our attention.

For parents of special needs children, this can be a difficult time. Often the previous year is something we would rather forget. When things are going well, it can be scary just to exhale, as the anticipated disappointment can be too much to bear. When your most heartfelt wish is that your child makes a friend, making wishes can be difficult because so much seems out of your control. Setting a goal can seem like a waste of time when everything seems so uncertain. Making resolutions can feel self centered as you think, “Don’t good parents always put their children first?”  Yet, how many times have we heard the analogy about parents on an airplane? In an emergency, we are told, we must secure our own oxygen masks first. The message is that we can’t take care of our children if we don’t take care of ourselves first. Easier said than done!

A friend of mine who is an author writes about spirituality and self exploration. She wrote:

One of my annual tools is to pick a word-of-the-year in early January, and explore it for the next twelve months. By the end of the year I hope to be able to sum up my findings in one short sentence that rings true for my particular essence. Last year I found that Gratefulness produces abundance. The year before I found that modern day Humility is voluntary simplicity. These findings are now part of my DNA, as is anything you sit with for an extended period.  R.M. Allen

She picks a word that scares her a little, and lists the reasons it scares her. I like this idea a lot. It’s a way to spend time working on me without taking time away from other obligations. I can think about my word when stuck in traffic or doing the dishes. Maybe I will post the word next to my bed or in my medicine cabinet, so I don’t forget. 

My wish for all of you is that you know, down to your DNA, that your best is all you can do. That you can let go of some of the guilt that you may be carrying around, and that you are able to exhale from time to time. I wish you and your family a very happy and peaceful new year.

Nancy Collier is our guest blogger.  She is a Family Support Specialist north of Boston where she supports families as well as providing them with information and resources.  On her days off, she plays with her grandchildren and walks the beach near her home.

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Saints and survivors

July 4th, 2011

We’ve all heard the statistics about the numbers of children who have mental health diagnoses, how they can lead to formidable problems in school as well as impact their relationships with friends and family. For some, the result can even be suicidal thoughts or acts.  It’s unsurprising that many parents can find these facts frightening and veer from disbelief to trying anything that might fix things.

I’ve known hundreds of families who attempted everything they could dream up to avoid having their child diagnosed with a significant mental health disorder.  Diane, a mom of four, had read that endorphins could counter depression.  So she went to Costco, bought a large trampoline and insisted her teen son work out on it every day.  He got fitter, but his depression got worse, endophins or no endorphins. Other parents have tried diets, herbal remedies and star charts hoping that a simple solution will fix an often complicated problem.

In the midst of dealing with all this upheaval around their child’s mental health needs, parents often find their marriage, financial health and ability to hold a job takes an enormous hit. While the data about children with mental health needs is sobering, the impact on their parents is equally appalling and very little attention is paid to it.  They face the steepest challenges of any group of parents, but get the least recognition and support.

This isn’t simply a result of stigma, though it certainly does play a part.    Parents of children with mental health needs have the highest divorce rate of any group of parents whose children have special needs.  A 2008 study reported that couples who have a child with ADHD are almost twice as likely to get divorced before their child is eight years old, compared to parents of kids without ADHD. In addition, among the two groups of couples studied who had divorced, the marriages with children diagnosed with ADHD were shorter than the marriages without children with ADHD. 

Other national surveys of children with special health care needs indicate that parents of children with mental health needs are more likely to lose their jobs or live in poverty. Up to 24 percent of families of children whose special needs had a major impact on their family reported that at least one parent had to stop working or cut work hours to care for their children.

Parents also report that their health insurance benefit is inadequate for their child’s mental health treatment and have to pay out of pocket for necessary services. PPAL’s 2010 report, Overcoming Barriers in Our Community, found that 32% of respondents said their child needed a treatment their insurance didn’t cover and 30% said that the copayment for therapy was difficult to afford.  In addition, almost 25% found it was difficult to pay for their child’s medications.

Many parents of “typical” children might find it overwhelming just to get up in the morning and face all this, let alone successfully navigate or manage it.  Parents of children with mental health needs ought to be seen as saints and survivors.  Our hats should be off to them.  Instead, they are often blamed and undervalued. 

While government and private foundations find money to invest in researching the causes of autism or childhood cancer (as they should) there is an assumption is that poor parenting choices, drug company conspiracies or shoddy diagnosis are some of the reasons for a child’s mental health needs. Parents of a child with a psychiatric diagnosis are more likely to be judged by others than parents of a child with developmental delays or chronic medical conditions.  They are also less likely to have the social supports and community connections that helps to support their family.

In spite of all this, parents whose children have mental health needs have created something amazing in this state and nationally.  There is strong family movement in children’s mental health led by those same parents who are trying to keep their marriages together, hold down jobs and be the best parent they know how to be.  It’s growing each day, one parent at a time.  Let’s give them the recognition they’ve earned.

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A mission to make “normal” memories happen

May 15th, 2011

Today’s post is by our guest blogger, Meri Viano. **** As I look around and see all the parents in my community raising their kids, I often wonder what it is like to experience “normal” school activities. As I raise kids with emotional needs, I try to teach my kids that there is no such thing as “normal.” But let’s be real here:  there are many times during the school year that we bump into a situation where we have to decide what kinds of “typical” experiences we need to make happen and which ones to let go of.

I am not the type of person that usually gets caught up in this, but  sometimes the differences between what my children experience in a therapeutic school and what other children experience in public school has to be thought through.  The other day, my son and I had a conversation and of course it turned into a mission.  My kids attend “private” schools (as they call them) and  I am fortunate to have found two great schools with parent support.

Mission 1:  My oldest son asked the other day, “Mommy can I get a class ring?”  I immediately said sure, then thought quickly, “Let’s GOOGLE it,” since it’s not something provided by his school.  I was amazed to find a site dedicated to class rings and even more surprised that you can engrave the name of your own town on it.  My son deserves the same special opportunities as other kids but I’m the one who has to make sure it will happen. I know this is important to him and is one thing that he will remember.

Mission 2:  My younger son has been attending a “private” school for 2 years.   He came home his first year and told me he was having school pictures taken. I remember saying, “Really?  That is great!” The director of his school, an amazing woman, takes photos of all the students in the school. If you have money or not you get a picture! However, my other son reminded me recently,  “I haven’t had my class picture taken for 3 years”  True–and how did I miss that? With all the other stuff, it just happened. Mission number 2 has been accomplished because the school director made this happen.  While demands such as MCAS had crowded it out, knowing it was important to the students put it back on the “to do” list.

Mission 3: I love volunteering in the school. To go on field trips, to make a project, to do a fundraiser with the students in the school – I love it!! I remember when I joined the PTA in my town.  It was an amazing opportunity to have parent voice front and center. But in “private” schools you are lucky if you even come across parents. Either no one is allowed to volunteer because of privacy issues, or you are the only parent asking because so many children are in care and custody of the state. When my kids were in public school, I made gingerbread houses,  was there for teacher appreciation day, and also field day! While I hated being the parent whose child needed a one-on-one, I loved being there.

At therapeutic schools, it is a new “concept” to have parents involved. Families, parents, siblings, grandparents are not often not visible there or attend activities.  In public school, you are invited to many things, and they know that parent involvement is necessary to have “active” supports for their students. In “private” schools it is “different” to ask parents to be involved.   Both of my boy’s schools are trying very hard to include parents.

Family involvement is really not anything new for schools to accept. However, it is hard for some schools to understand that even with obstacles and challenges, we want involvement. We just need to be asked and told that we are wanted.

As I thought about the differences in public and “private” schools, other milestones came into my mind:  prom, high school graduation and then the bragging and boasting about where your child will be going to college.  My kids will grow and understand that it may be a bit different, but it will be unique, special and amazing. 

I am extremely lucky to have two kids that will teach me how to advocate for “normal” childhood memories. Hopefully, they will have many more of them and know that they are worth just as much as any kid that goes to public school.

The picture is of a school zone sign from the Ottawa County Museum in Kansas.  It was taken by Chris Murphy.

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Why we need awareness week

May 1st, 2011

In the mid 1990s, I went to a conference held by the National Federation of Families for Children’s Mental  Health and heard for the first time about children’s mental health awareness week.  A group of parents from Missouri had come together and decided that the best thing they could do for their children was to work on stigma.  They thought that stigma was as large a barrier for parents whose children had mental health challenges as access or lack of effective treatments.  It probably still is.

One of the reasons I was so drawn to this new campaign called children’s mental health awareness week was that my son and I had had our own jarring experience with stigma.  When Matthew was 7, he had his first hospitalization.  It was preceded by months of being withdrawn, often unable to leave the house and ultimately an attempt at suicide.  When he came home, he went around the neighborhood to his friends’ houses and announced, “I was in the psychiatric hospital but now I’m better so I came home.”  Most parents responded, “That’s nice, Matthew.”

One mother, however, immediately called me.  She said she no longer wanted my son to play with her daughter (who had been one of his close friends) and further, she didn’t even want him to come onto her property.  I was stunned, hurt and bewildered.  I was sure this wouldn’t have happened if he had been hospitalized for almost anything else.

Current studies show that human brains prefer data that support what we already believe. A 2007 study by researchers from Indiana University, University of Virginia and Columbia University shows that Americans believe that children with depression are likely to be violent.  In the same study, 82% felt that doctors were overmedicating children and 56% felt medication prevented families from working out their problems.  An additional 45% believed that rejection at school is a likely consequence of getting treatment.

Parents are experts at determining risk-benefit ratios.  While we are all committed to standing up for our children and fighting stereotypes about children with mental health needs, we also know that stigma still packs a powerful wallop and can be deeply rooted in society’s beliefs.  One mother commented recently, “Sometimes the stigma can be worse than the illness.” As many as 79% of families whose children have mental health needs avoid seeking treatment for their children due to stigma.

That’s why we need children’s mental health awareness week.  We need to educate people about what works to displace what they “think” they know.  We need to call them on their ignorance and replace their beliefs with new ones.  We need to show support for children, youth and families who are seeking the care they need to counter public opinions on treatment.  Most of all, we need to say that stigma is socially unacceptable.  Stigma diminishes all of us — it lessens our possibilities, narrows how we view health and limits our future. 

In America, we fund treatment and research for people with illnesses who we see as most similar to ourselves.  Nearly everyone has a relative who is a cancer survivor and is willing to say so.  Many people have family members and friends whose children have mental health needs, but stay silent. Awareness week is a chance for all of us to speak up and speak out.

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Massachusetts parent voice goes to Washington

April 24th, 2011

Today’s post is by Michelle Brennan, our guest blogger.  Michelle is a parent from Massachusetts who recently went to Washington to advocate for children’s mental health.****

I recently had the opportunity to go to Washington DC to lobby for better children’s mental health services. I was there as the Massachusetts parent voice and to partner with child psychiatrists to make the case that continued support and funding for children’s mental health is crucial.  It was truly an honor and an experience I will not soon forget.  I learned many things but the most important was:  we as parents have the power to enact change for our children.

The American Academy of Child and Adolescent Psychiatry (AACAP) has an annual lobbying day.  They bring together psychiatrists, medical students, advocates and parents to work in teams to lobby the congressional delegation from individual states.  I had the privilege of working with two great psychiatrists, John Sargent, director of Tufts Medical Center’s  Child and Adolescent Psychiatry division and Anthony Jackson who works with the state mental health system and is in private practice.  The AACAP gave us training and information which made me and parents from other states feel at ease as we visited the offices of our senators and congressman.  Our team met with representatives from  the offices of Senators John Kerry and Scott Brown as well as Congressmen John Olver, Stephen Lynch and Ed Markey.  Since these staffers can meet with as many as 40 groups per week, it was important  they remember us and our message.

Here is where the power of the parent voice comes in.  My husband and I have three sons with various degrees of mental illness.  When speaking with the legislative aides, I was able to tell them our personal story and show them a picture of our sons.  The picture is one of the boys with great smiles in front of the trees during the ice storm in central Massachusetts last year.  As I spoke of each boy, I would point to whom I was referring.  Being a parent from PPAL without ties to a professional organization, I could then ask them if they have had any experience with mental illness in their lives.  Most had been touched by this experience whether it was a family member, friend, college roommate or someone else.  Once they would share, I could follow-up at the end of the meeting. 

When I returned home I sent each person I met with a hand-written thank you note featuring a painting of the Boston Common and a picture of my boys.  In the note, again because I am a parent, I could thank them for sharing their story.  I believe this helped them remember us.

Another way that we as parents have the power to enact change is through collaboration with others. Until I went to Washington, I did not understand the value of working with psychiatrists and therapists on the imperative changes needed from our insurance companies.  I have spent the past five years fighting insurance companies to get the services our family so desperately needed.  I have learned billing and diagnostic codes, appeals processes and have fought for out of network approval for the ever dwindling pool of providers left in Massachusetts.  While the psychiatrists with me cited the sobering statistic that 50% of child psychiatrists are planning to leave Massachusetts in the next five years, I was able to talk about how this impacted my family.

I learned that we can work together to create change. Whenever you are asked to contact your elected official regarding a vote or creation of a bill, do so.  The offices keep track of every phone call, email and letter regarding an issue.  Your voice DOES count.  Remember, we are stronger together and we could ever be by ourselves.

Finally, change takes time.  Do not be discouraged.  Just like with our children, we cannot make change overnight.  Our efforts will all be worth it because of our children.

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