I have been exceptionally good this year. Well, at least I’ve tried really hard to be good. But there are all sorts of things that can get in the way.
I’ve been doing extra chores this year. It’s hard to pick up after children that hide things, especially cookie dough behind the cabinets, snacks in drawers, and even the papers that get ripped up into a million little pieces because it is an “activity” that keeps one of my kids busy. It can take a huge amount of planning to get the chores done and also manage to pick up and move pictures to the holes in the walls so that the visitors do not feel they have entered a “unsafe ” place.
I am not even talking about the singing that I have to do to get my daughter to eat, or the dancing I must do to get her to drink. It is difficult being the mom and the entertainer. Combining discipline and building positive self esteem is hard. NOT like the Italian home I grew up in.. you knew if the wooden spoon was raised you ran!
I have also tried to go grocery shopping at 11pm so that my children are sleeping all nestled in their beds and limit the number of customers who point at me and say “That”s the mom with the unruly child.” It also helps with the child who feels he needs to eat certain things to keep the voices in his head away.. if you drink lots of water you will not hear the scratching on the window that is not there.
I am trying to be nice to everyone but Santa, have you ever called Mobile Crisis? They want you to schedule a time for the crisis! When you call, they seem to always say it is shift change and they won’t have a clinician in for four hours. How do you pause a crisis? I call, at first to explain, then I’m more demanding but still patient, and then okay, I talk about the laws and then I’m called the parent OUT OF CONTROL.
Santa, I’ve spent a lot of time teaching too. Everywhere I go it seems I have teaching to do — grocery stores, banks, even people in cars looking as you are waiting for the stop light. Seems like everyone has to LOOK at our kids and judge us. So I am trying Santa.. but it gets hard. The new item in the state is Wraparound. What they don’t tell you is…well, can you imagine not believing in strength based families? Why is it such a hard concept? And you know my tough child–the one that hears voices–who doesn’t know what to do and sometimes wonders why he should continue to try? This Wraparound thing would never work for him because he is too unique–the system calls him too complicated.
Finally.. I really want to go back to DMH and get a caseworker that believes in families, believes in clinical help. They call back, they support, and guess what .. they do not want to file 51As. I am trying to believe that the professionals in Wraparound will get it.. but how many times do you need to change teams in order to succeed?
So I hope all this counts. My list this year is a list of the things I think would help me with the system. It’s a little like a top 10 countdown (I would love to be Jay Leno, or Letterman). Will people get my sense of humor? It is different then most… I guess not really if you have a child like mine.
The items on my list are in the order of importance, so if there are too many things for you to carry, please delete as few of the items as possible, starting from the bottom of my list.
Santa, I will leave you organic oatmeal cookies and soy milk (in case you are lactose intolerant) and carrots for your reindeer (organically grown of course).
Thank you in advance. I know you receive a lot of letters so you don’t need to reply unless there is a problem with my list or you need services for another child. I have taught myself to be resourceful so please let me know if I can help someone else get it right!
10. Mobile crisis to move in my home
9. Clinicians who will talk to all parts of the team
8. Schools that do not depend on the parent to play expert, and then blame them if it doesn’t work
7. A secretary
6. A full time nurse – those somatic symptoms creep up on us
5. News station to teach the public about children’s mental health
4. Safety protection.. not what you are thinking… i want bubble wrap so when the heat is hot.. i am protected!!!
3. Another set of eyes.. reality tv please. The money would pay for the lawyers.
2. I always wanted more children, so for this one could each kid in DCF or any other system get a someone to call mom, dad, grandma or grandpa?
1. Ok.. I have decided.. nothing can be cut off my list…I need it all to make things work
When my son was seven, he had his first psychiatric hospitalization. He had become incredibly afraid of going to school and was often unable to get there. He had nightmares almost every night and was frightened by television shows he used to enjoy. He started talking about suicide and began to hurt himself. In short, his world was filled with pain and fear. It finally led to a hospital admission.
I took his four year old brother to see him. He watched with wide eyes as the many locks on the psychiatric unit were opened to let us in and then the doors were locked behind us. He looked at his older brother and asked, “Don’t you just feel like a monkey in a cage?” “No,” his older brother vehemently said, “It’s safe in here and nothing can hurt me.” So from the beginning it was clear that they were going to have two very different views of the treatment, the behaviors and the impact of mental health needs.
Mental health issues impact not just one child, but the entire family. When parents have the chance, they can share with each other their sadness, anxiety, anger and frustration. Even though they are also profoundly impacted, siblings have few places to get information, safely vent or even get a break. When talking about my two sons, I often say that one has a diagnosis and the other experiences “sibling spillover.” When I use this term to a group of parents, they nod their heads with recognition. Sibling spillover happens in a lot of homes.
The impact on siblings whose brother or sister has significant mental health needs is just beginning to be studied. Until now, most research has been focused on siblings whose brother or sister has developmental delays, autism or chronic illness and even that is uncommon. Emily Rubin, Director of Sibling Support at the Shriver Center, says that “the most effective intervention is for parents or guardians to talk openly with siblings at an early age, acknowledging their complicated family lives in age-appropriate language.” She wrote an excellent brochure for parents, one of few available resources.
Most siblings whose brother or sister has special needs notice that much of the attention, resources, time and energy seems to be unfairly divided. And siblings can feel angry, resigned and ignored. But when your brother or sister also has behaviors that can be aggressive, bizarre, frightening or embarrassing, there’s even more to cope with.
Siblings have a variety of coping mechanisms. Some become the “good child,’ others withdraw and some may even mimick the behavior that seems to get all the attention. When they grow up, many go into “helping” professions (teacher, therapist, etc.) while others move across the country. At least for a while.
As for my two sons, I was advised that things would get better as they got older. My younger son went from saying that his brother was “a good boy who did bad things” to saying that he was a “terrible brother.” I noticed that my older son often got along better with adults than peers and waited for the day they would both be young adults. Gradually, they rediscovered the common ground that comes out of sharing experiences as a family. Siblings in the same family often see things differently and that’s okay. Maybe that’s the way it should be.
According to PAL’s most recent report, parents rated psychotropic medications the most effective treatment available to their children. A number of people have been pretty surprised. “Really?” they asked. “Why would parents say that?” Treating children with psych meds for attention, mood, behavior or other mental health conditions generates lots of strong opinions, rhetoric and even judgement. Much of it is negative; it seems no one really expects parents to say anything positive.
But parenting is a practical endeavor. Parents want their children to be successful in school, be able to manage their emotions, have rewarding relationships with their peers and family and most of all, be pain free. Parents look for things that work and help their child do better whether it’s structure, a strict diet or medication. We try out different options but end up making choices based on results. Studies show that stimulants work for 70 to 80 percent of patients who need them and anti-depressants for 60 to 80 percent.
In an interview about her book We’ve Got Issues, Judith Warner says that we’ve been talking for the last 10 years or so as if children are routinely being over-diagnosed and overmedicated and lazy, competitive parents are basically acquiescing and pathologizing and drugging their kids in order to give them a competitive edge or in order to save themselves the time and trouble of real parenting. She goes on to say that this is not only false, but also really hurtful. It can actually keep kids who need mental health care from getting it when parents internalize these messages and worry about fitting those stereotypes. They can question themselves and their own instincts about whether something is going wrong with their kids. And this doesn’t benefit anyone.
There are often high expectation for our children. Schools often hold students up to rigorous attendance standards whether or not they have mental health needs. If a child is depressed, fearful or has just returned from a hospitalization, he or she is still expected to show up at school. They are also expected to focus, and behave well. These results are expected by schools, and everyone else, to occur in a very short amount of time. Long gone are the days when children had time to stay home and recover from an episode of depression.
Most parents want their children to stay home and receive care in their own community. We want our children to be part of their family and be able to have a healthy relationship with their siblings. Sometimes medication, hopefully in tandem with other treatment, is what makes this possible. And sometimes, it’s all we have.