Tag Archives: children

3 thoughts about COVID-19 and parenting children with mental health needs

April 17th, 2020

When the first news reports told us that COVID-19 was on our shores and would be a lot worse than we all predicted, I had the strangest thought.  Maybe parents like me, who parent kids with mental health needs, have an acquired skill to help us handle this better than others.  Maybe.

The quarantine and stay-at-home edicts don’t have an end date and feel like they could go on forever.  We are not sure where our next roll of toilet paper is coming from.  We have to count on people who hold power and authority to do the smart thing and know they may not get it right.

But we are accustomed to ambiguity.  We live each day knowing that a diagnosis might change next week and the medication that works today could stop working at any time.  We are used to being promised something and then find out it’s not going to happen.  So we learn not to bet the farm on what people tell us, even the well intentioned ones. It’s not a matter of trust exactly.  Instead we have the experience over and over again of counting on people who hold power at school, in mental health programs or at insurance companies to do the smart thing for our children and then realize it’s not going to be delivered.

We hold two versions of the world in our heads at the same time – one where disaster is always waiting and one where we have a hope filled vision of the future.  So my first thought was that we have the needed skill set down already.  I spent years, from the time my son was small, never sure if it was going to be a good day, where I had a bit of control over how things would go or a bad day, where his mood was the rocket booster for a day spiraling out of control.  I developed the skill of living with uncertainty big time.

Maybe parents of children with mental health issues are better at this than other people, I thought.

That was my first thought.  Here is my second.

Our disrupted lives are even worse for parents raising children with mental health needs because they already are the therapist, the coach, the nurse, the structurer and the reporter.  Most parents are already maxed out.  There were so many days before the pandemic where we didn’t have one iota of energy, patience or motivation left by dinnertime.  Sometimes there was nothing left by lunch.  Because of how our lives have been upended by the virus, we now have several more roles.

Add in teacher, usually special education teacher, without any training to teach the curriculum, manage classroom behaviors (familiar with those) plus technology expert.  Sure there are plans we can follow and Facebook live or videos to consult.  But there are how-to-do-it videos showing you how to change a tire or cook a 5 course meal.  It doesn’t take you from still-figuring-this-out to I’m-up-to-speed very painlessly.

Now add in technology expert. Telehealth is the widely promoted new option and many parents like it.  But others struggle with the apps, technology and internet access issues.  When you don’t have an iota of focus left, it’s just another barrier that is now up to parents to figure out.

On top of all that, our kids are famous for not transitioning well at all and this came about so fast.  Some parents didn’t even have time to get the school medications from the school nurse.  Others are trying to figure out where the classroom is actually located in their homes (kitchen counter? living room couch?).  Some have children in programs and they can’t see them in person or have limited screen time with.  Others have children who were abruptly sent home from programs with a ridiculously small amount of transition planning.  Helping kids through a rough changeover from life as it used to be to life today is far easier if you have a clear picture of what things should look like.  Most parents are still figuring it out and tweaking it.

Other parents are anxiously watching their children ramp up or slowly shut down.  They are experts on their children and know the danger signs of an emerging crisis. Families are doing everything they can to hold off on a visit to the emergency department because no one wants their child or themselves exposed to this horrible virus.  They feel afraid to fail and determined to get through one more day and then another.  But the toll it exacts is pretty enormous.

Last, there is the isolation.  The sigma of parenting a child with mental health problems damages family closeness and friendships even in the best of times.  In times like these, even though we are overloading the cellular and internet networks, the isolation is increased tenfold.  Parents feel it deeply.  Many post questions or vent on closed Facebook groups or call in to virtual support and discussion groups.  They’ve become the new gathering place.

My third thought was it’s even worse for our children.

The greatest fear children have is that they will lose one of their parents.  News on television and online shows us pictures of front line workers pleading for protective gear and graphs of multiple deaths.  It bombards us all, even if we try to limit how much we watch or our children see.  I lived in Southern California when my kids were little, where the news reports the number of freeway deaths every day.  For most children living there, their greatest fear is that their mom or dad is going to die in a car accident. Most children don’t express and it and many cannot articulate it.  But it lies underneath their view of the world and stays there for a long time. This is much the same.  For kids who already cope with anxiety and depression, it can have an even greater impact.

I had these three thoughts and they are with me every day.  I think they probably will be for a long time.

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It’s just a phase and other lies they told me

July 13th, 2015

truth liesWhen my son was four, he had imaginary friends. They had to be seat-buckled in the car, be served their own buttered roll at dinner and tucked in at bed time. One of his imaginary friends was called Baby Monster. His imaginary friends didn’t go away in six months or a year and I worried. When I brought this up with my son’s pediatrician, he said, “Many children have imaginary friends – it will go away on its own.” But they remained and by age eight, Baby Monster had turned into a voice that told him to hurt his brother.

His anxiety grew and grew and midway through first grade, he became terrified to leave the house and go to school. He slowed things down so he missed the bus, he cried, he pleaded and eventually he would shake and curl up into a ball. “Lots of children have separation anxiety, his teacher explained. “He’ll grow out of it.” I tried one strategy after another but none worked. Everyone but me was sure that it was just a phase. Lots of children in kindergarten and first grade go through something like this, I was told.

Like most parents, I wanted to believe that these things were temporary. I took the advice of the pediatrician, the teacher and sometimes other mothers to heart. They said these things were in the ballpark of normalcy, so I shushed my inner intuition. I tried not to listen to my worries, but I still felt concerned and frustrated that my son wasn’t growing out of his “phases.” He was a young child and it seemed like time was on our side. “Wait and see,” I kept hearing. I waited, but things got no better and then they got worse.

Turns out the advice givers were wrong. It was not a phase, or a stage. He didn’t grow out of it. It didn’t go away on its own.

When you are told that your worries are unfounded, again and again, something changes. You become cautious about whom you confide in. When you are telling a story about your child or recounting an event, you watch the other person’s face and, at the first hint of disbelief, you stop or ratchet down. When you hear stock phrases such as “it’s just a phase” repeatedly, it finally stops reassuring you and makes you wonder why only your child is the one with a phase going on for months or even years. This caution can last for years and spill over to new therapists, new providers and others.  They sense a distance in you, a reserve.

As parents, we fear labeling our child or pathologizing them. There are a number of articles out there saying that we are “pathologizing childhood” and I flinch when I read some of them. John W. Whitehood in an article in the Huffington Post claims that what is simply childhood behavior such as distractibility, nonstop talking and showing emotions without restraint is now being diagnosed and treated, often medicated. He claims that these are behaviors that don’t need an intervention. On the other side is Thomas Insel, MD, the director of the National Institutes of Mental Health. He suggests in his blog that there is a “real increase in the number of children suffering with severe emotional problems, just as there is a real increase in the number of children with diabetes and food allergies.” While there may be children and teens who are getting more medication than they need, there are also others who never get the treatment they need, he adds.  But with diabetes and food allergies, parents don’t worry about labeling their child.  They know it’s not a phase.

These are two quite different points of view which can influence how we see our child. When we see things that worry us in our child, should we seek help, even treatment? Or chalk it up to childhood behavior?

We observe our children from the moment they are born. We notice both the big things and the little ones. We see the small changes, the ones that persist and the ones that come and go. We are like scientists in a laboratory, putting forward hypotheses (sometimes right, sometimes wrong), making careful (mental) notes and comparing the evidence we see against what we expected. We become experts on our child, knowing what things are worrisome and what are just his or her quirks. That expertise is valuable and often unacknowledged.  We shouldn’t let anything get in the way of using that expertise to help make decisions.

Science shows that treatment often produces better results if started early. Some studies show that earlier treatment such as effective therapy and the right school environment (with a zero tolerance for bullying) may lessen the need for medication. The key is to stop saying that it’s a phase and seek help. If my son had had medical symptoms, I would have been encouraged to be proactive and praised for noticing early signs of what turned out to be a bigger problem. My inner intuition and my parental expertise would have been bolstered. Like many other families, we had to get to a crisis point to get everyone on board.

Parents worry about their children; it’s part of the job.  Just as pain can tell us to seek medical attention, worry can propel us to get help too.  A parent’s worry can be an early warning sign that something needs immediate attention, not reassurance or false comfort.  Children are wonderful in their variety and complexity and their individual responses to life’s stressors can be all over the place.  But when a parent’s radar goes off, when that inner intuition tells you that this is serious, it needs to be respected and validated.

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Life, choices and accepting people as they are

November 26th, 2012

I remember when I was just me. Just an innocent girl who had no idea what was going on. Now I know better. Before I was happy, but now it is sometimes very hard to find a smile. My name is Bella and I have had a rough life so far. You may say after reading this that my life isn’t rough but the way I see it, it is. I am sixteen about to be seventeen, not even a month away from my birthday. Some worry about birthday gifts, but I worry about life. “What will life throw my way?” is now a constant thought in my head.

I am currently in a terrible school. I have been in many schools so I should know. Because of the school I am in now, it is hard for me to get motivated to go. I have had a CHINS placed on me by the school because of not going. We talked to the court and had notes from my therapist and the person who did my testing. They read the notes and understood that the school wasn’t helping me but I still had the CHINS put on me. This school is an alternative school. They call it a “therapeutic day school,” which I find is funny, since in my opinion they do not help. I know they try to help but they usually make it worse. All the staff there are nuts and they don’t catch much of anything. For example, I was getting beaten up by a kid one day in the small cafeteria. A staff walked in and asked what was going on. The kid said, “Nothing,” and then left. The staff believed him! I was shocked and honestly I felt hurt inside because these staff are supposed to protect you. And they can’t even handle that task. So that added to my school refusal. I don’t really trust anyone there except for a select few kids.

My home where I live is alright. I still live with my parents and my sister. I love them dearly but sometimes they can be a pain. My mom was in a car accident before I was born and has PTSD (post traumatic stress disorder) from it. My dad was laid off at the end of January this year. My sister has had a lot of bad stuff happen to her also.

My sister is one of the nicest people I know. She speaks her mind and is original. But most of the other kids want her to be just like them. Except she isn’t just like them. So naturally she’s been bullied. She wasn’t only bullied by the kids, she was also bullied by the teachers sometimes. There was this one guy who was a guidance counselor who would intimidate people. He intimidated my sister and my mom. If I met him I would have given him a piece of my mind because he claimed to have a child of his own with mental health/special needs. Honestly, I don’t care if the kid is purple, has tentacles, or has three heads, you don’t treat people like that. While I may not be big on religion, I still hope that people can learn how to treat others correctly. As in learn to help others and not harm them in any way.

I find all people are different. Some can be similar but never exactly the same. No matter what, we are all original. You just have to embrace it. If everyone embraced this concept, it would make the world a better place. If we accept people as they are, with their quirks and faults, and become more understanding and considerate it would be better for the world. And for humankind as a whole. This is what I believe.

As much as I feel alone, I also want to be known. I want to be who I am and remembered for who I was. I want my name to be remembered. I want to be my own person and remembered for it. And I want to be there for others just as my friends have been there for me.

I don’t want to give in to peer pressure. Sometimes that’s others making bad choices, trying to make it seem okay, and trying to get you to make the same choices, too. For example, underage drinking. I don’t see what’s so great about drinking at this age. And drugs, why is that so great? Does it magically fix all your problems? Does it pay your bills? I don’t think so. I think it is just going to cause you more problems in the long run. For example, if you get caught you are going to go to court and possibly jail. Was it really worth it? Smoking is a different story depending on if you are able to buy it on your own. But still it can cause some lifelong issues no matter what your age is.

I have not given into peer pressure for anything yet; my choices are still completely my own. I have not done drugs, drinking, or smoking. But I have still made some poor choices. Yet, I do not regret anything I have done. Just because I do not regret my choices doesn’t mean I am necessarily happy or proud of all of them.

No matter how many mistakes I might make, I don’t want to regret them. I won’t be able to change choices that were made in the past, so I don’t dwell on them. I want to continue down the path I have chosen until I reach the next fork, the next decision. As much as I might want to change choices, I cannot, so I just try to make better ones the next time.

Bella is a member of Youth MOVE Massachusetts. She lives in Central Massachusetts.

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Have a little faith

March 12th, 2012

When my son was in elementary school, we decided to go back to church.  We had belonged to a church when he and his brother were very small.  I taught Sunday school, mostly for preschoolers, so I could keep an eye on him.  We were part of a small but vibrant church community and we valued that.  Then he took a nosedive into a series of mental health crises.  Getting anywhere was a challenge and church fell by the wayside.

We moved back to Massachusetts and decided to try church again.  We asked around and chose a church with a reputation for being welcoming and accepting.  My sons began Sunday school and I looked forward to an hour each week when I could be part of a supportive community.  It went pretty well the first week.  By the third week, the Sunday school teachers were coming to find me and ask if I could come help them.  My son had a hard time sitting still, they said, or focusing.  He seemed extremely fearful some of the time and “wired” at other times.  They simply had no idea what to do and felt pretty frustrated with him when their strategies didn’t work.  Welcome to my world, I thought to myself.  We lasted only a few weeks longer. 

A study published in June 2011 by Baylor University examined the relationship between mental illness and family stressors, strengths and faith practices among nearly 5,900 adults in 24 churches.   The study found that mental illness in a family member can destroy the family’s connection with their religious community and many affected families leave the church and their faith behind. The results found that 27 percent had mental illness in their families, with those families reporting double the number of stressors, such as financial strain and problems balancing work and family.  In addition, those families said support and assistance was very important to them, while their congregations seemed to overlook this need entirely.

I have continued to hear stories from families about the disconnect between what they hope for from their churches, synagogues and other faith communities and what they actually receive.  Some have been advised to discipline more, to love more, to seek a therapist (most already have) and to be patient.  Many are told that “God doesn’t give us more than we can handle.” Most parents, however, are not looking for advice.  They are looking for support, acceptance and a place to belong. 

A few years after I had stopped attending church with my sons, I was running a support group for parents like me.  While some had managed to stay connected with their religion, many more had had negative experiences.  One mom came week after week and described how she was trying to get her daughter confirmed (they attended Catholic church) and how it was very important to her.  She had made a hurculean effort to bring her daughter to class consistently.  She had coached her, steadied her and intervened for her.  At the end of the confirmation classes, her daughter was required to attend a weekend retreat.  The church staff said they absolutely could not oversee or administer medication and she knew her daughter couldn’t go without her meds.  At first, they wouldn’t allow her to drive out with the medications and all seemed lost.  She pushed, she insisted and ultimately was allowed to drive out each morning and evening to bring the medications.  Her daughter made it through the weekend and successfully completed the retreat.  But she had to fight to make that happen.

We’ve made strides in ensuring that children and youth with mental health needs are included in school activites and community events.  Parents find the one cub scout pack that welcomes boys with ADHD or the only pottery class that is fine with anxious girls.  However, many simply walk away from the religious community they grew up in when they find their children are not accepted and they feel judged as parents. 

Parents whose children have mental health needs want and deserve supporting, accepting and welcoming religious communities.  Here in Massachusetts, we have made a committment to providing treatment and services in the community whenever possible.  We encourage wraparound teams to identify and seek out natural supports and churches, synagogues and mosques are often used as examples.  But most places of worship need training and education for their staff and volunteers, who often hold the same stereotypes as others who don’t have a family member with mental health needs. With a better understanding of how they can help and concrete steps to make it possible for families to be part of a faith community, the connections can be strengthened and renewed.

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Life Skills vs. Social Skills

February 16th, 2012

I remember learning to cook as a small child, helping to bake cookies and enjoying the time that I spent with my grandmother as she made cookies to bring on vacation with us. It was fun, it was important and most of all it taught me skills.

I also remember as a child going to buy something , not having enough money and having to put it back on the shelf. Sometimes I went to the local corner store and bought milk and bread. It was a great feeling when I was the kid chosen to go in alone.  It was a game to see who would get to go walk a mile to go get the milk  and if you were given that level of trust.  If you walked, you could also get a piece of candy. My mom and grandparents were crucial in teaching me life skills at a young age. If anything, I was taught more and at a younger age than I teach my own kids.

When you have children with special health care needs, life skills and social skills come only when it’s time. It is hard to determine what to teach when. I continue to look for that elusive manual that tells you when to teach your child how to go in to the store alone and trust that they know enough not to eat the candy that they do not have money for.  I continue to wonder when to teach my son how to go into the post office and buy stamps alone and add up how much it will cost. He looks at me and says, “Can’t you just buy them online and it will add it for you?” Yes, of course, but I am trying to teach life skills, not the skill to google the world. That is taught enough.

There are wonderful authors who have written about life skills and social skills and you can download lots of ideas.  But it’s hard to teach the emotions, behaviors and understanding that it takes to make a cake, do the dishes, know how to complete a recipe, or clean the kitchen. It is even harder to teach going into a store alone, the post office, bank and/or ordering pizza in person or on the phone. It takes skill, practice and a lot of repitition for any kid as well as clear directions and teaching of the steps.

It has been an eye opener for me over the past few months. My son moved home from residential. His emotions are in check. He is able to talk and let me know when he feels I have not heard him. For social skills and emotional regulation, he gets a B plus.  He continues to struggle with being able to go into stores to get milk. We’ve discussed where the coolers are so that he could remember. He has refused to order a pizza on the phone because, well, that is just too hard. Life skills continue to be a struggle daily. But with practice he will catch up . He is determined and so am I.

My middle son, the community child, has done an amazing job learning life skills. Ordering a pizza is no problem, cooking dinner- no issue, and clean – got it! He makes complete dinners and has for the last 4 years. Loves cooking since age 11. He can also do the stamps on the bills and knows where to put the stamp- that is a life skill too! He continues to put the family’s needs ahead of his own.  But the anger, the emotion and the connection to allow friends and family members to give suggestions or have a conversation is hard. Social skills continue to be a struggle in his life.

Finally, there’s my daughter.  She is developmentally about 10 years younger than she is chronologically. She works on life skills and social skills daily. It is a daily routine in our house to do, learn and teach each other. I am a lucky mom to have three sensitive and caring children. My challenge is getting them ready to spread their wings. It will happen in its own time and mine. What won’t wait is the society around them. The world is not a patient place sometimes for our kids. It takes time for many to remember that kids are kids and teens are teens.   

So as you go into that store and see a teen or adult looking for the milk – ask if they need help. They just may need a little direction to allow them to gain a skill.  Remember both my sons and daughter have had many challenges, triumphs and teaching opportunities as they have grown but it may take your kindness to help them “get it”.

Meri Viano is our guest blogger.  She is the parent of two sons and a daughter who continue to inspire her blog posts.

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