How to be an advocate for your child

I found myself last night sitting in the emergency room with my child basically yelling at the psychiatrist that no, I did not feel like my child needed to be admitted and that in fact I felt it would do more harm than good. And isn’t that the golden rule of medicine, first do no harm? Somewhere along the way in our world we have become so reactionary. Everything is taken to the extreme these days. It has become a problem to feel sad or to be overwhelmed or stressed or anxious to the point that we no longer have any ability to regulate our own selves as we rely on other people or drugs to do it for us. This needs to shift. Yes we need to pay attention when people cry for help but we have to match the cry for help with the appropriate service. Just crying for help does not mean a person needs to be fully admitted to an inpatient psych ward. There was a substantial difference between last year when my child absolutely had to be admitted because she was literally acting on her wish to die versus now when she feels sad and overwhelmed and thinks about how much easier it would be to just not be alive. What kind of lesson are we teaching our children when every time they express challenges or discomfort we tell them there’s something wrong with them and send them to the hospital? How do they learn resilience and to feel the full range of emotion? Do we expect them never to feel sadness or challenges or stress or anxiety? I personally don’t think so but this is what we are telling our kids when we jump to hospitalization quickly and without all the information.

In the heat of the moment in the ER, the psychiatrist said to me in response to me advocating against hospitalization “And what if you bring your daughter home tonight and she kills herself? How would you feel?” To which I responded “And what if I agree with you and send her to the hospital and two weeks later she comes home and kills herself? How would YOU feel?” She basically said point taken and backed down but this interaction led me to really think about how we as parents and caregivers need to advocate properly for our kids. Even though there are “experts” surrounding us and they are well meaning, we are the foremost expert on our kids and what makes them tick. So here are some tips for how to advocate for your child:

  1. Breathe. Emotion easily takes over when things happen with our children and we tend to overreact with little information or understanding of the information. If you take a step back and a few really long, deep breaths you will slow yourself down and allow yourself to make a more educated and appropriate decision based on all the information and evidence.
  2. You are the expert on your child. You know them best. You know their quirks and their strengths and the weaknesses and their patterns. The doctors or specialists that come are getting a snapshot instead of the family album. Fill them in on your child and don’t hold back. It’s ok to say your kid manipulates people or situations, it’s actually helpful. I described my daughter last night as having an immature brain and a propensity for running away from challenging situations and change because it’s true. Tell your story and don’t let them cut you off or strong arm you or bully you or scare the shit out of you into making a decision that you know in your heart and gut is the wrong one.
  3. Gather your army around you. If you know people in the field call them immediately and do not hesitate. If you broke a bone, you would call all your friends to find the best orthopedic doc so do the same here. Don’t be afraid to use the people you know, they can be your lifeline in a very difficult situation. The mental health system is extremely difficult to navigate at best and close to impossible at worst. People don’t know where to go, how to proceed, or who to talk to and it can be maddening. I am here for anyone who needs me but I can tell you to start with your pediatrician and go from there. Don’t be afraid to share information with your child’s primary physician as they can guide you in the right direction. There are also mental health crisis teams in communities that can come to you or that you can go to to get a risk assessment and talk about services and next steps. The ER is always available but do your research and make absolutely sure they have a child/adolescent psychiatrist on staff or else DO NOT GO THERE. Make sure you have someone with you such as your spouse, your best friend, you parents, anyone. You need support as much as your child does and you cannot go it alone.
  4. More is not always better. Sometimes we think that to do what’s best for our kids we have to give them every service under the sun in order for them to “get better”. But what this tells your child is that they are unable to help themselves or to develop the skills themselves that they need in life. Recently, a crisis team member told me that my child absolutely 100% should be on an IEP. Basically, I should tell my child that she is so disabled that she cannot access her curriculum like her peers and needs to be taught differently. I disagreed with that. I feel there are times when IEPs are very appropriate but we need to be careful in labeling children just to get them more services because we’ve been told more is better. Being an OT in the schools, I’ve sat in meetings where parents have said to us, well we were advised to ask for everything so that we get something. Here’s the issue, be careful what you wish for. If you suddenly get “everything” your child can be pulled out of class several times a day missing vital curriculum, placed in a substantially separate classroom, or even out placed. And where there are times that this is necessary, it should not be the norm, it should be the absolute exception. There are ways to help kids while still holding them accountable and challenging them to help themselves in spite of learning, emotional, or physical limitations.
  5. Eat. If you find yourself in a situation such as I was in last night, in an emergency room, throughout the evening, order yourself some food and settle in because it’s going to be a long night and process. I highly recommend all the carbohydrates be present in your food as well as cheese because cheese should be a food group unto itself and makes everything better. There is little that cheese can’t fix. Unless you’re lactose intolerant, then you may want to take a lactaid pill or skip the cheese. In all seriousness, keep your own strength up and eat something. You are no good to anybody if you are hungry to the point of disorientation and trying to make the best decisions for your child.

Most importantly is to be gentle on yourself and your child and to know that somehow you will figure this whole thing out with some help and support. To help you out if you don’t know where to start, here are some resources in mental health:

http://www.parentcenterhub.org/repository/mentalhealth/

http://www.aacap.org/aacap/families_and_youth/Family_Resources/Home.aspx

http://www.mentalhealth.gov/

 

 

 

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2 Comments

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  1. Wow Baze I loved this one too! You probably don’t even have the time to read all my comments everywhere, but I’m a huge fan of ALL these posts! Back to far less horrifying potty training, we had a problem. I even took Jagger to an occupational therapist (wish I knew you were one). I’ve read every parenting book since I was pregnant, from “let your child sleep in your bed until they are 18” to “let them cry it out at birth”. The ONE thing EVERYONE agrees on is don’t punish them for accidents. Well, when after 6 poos in one day your child walks up to you laughing and says mommy change me again, at that time, my mommy instincts kicked in and I started spankings for accidents. In one week, he was trained. Long way to say WE KNOW OUT CHILDREN BEST! They don’t have big marshmallows here, but I get them at Aldi once a year. Next time, I’m going to make s’mores with the entendres family and burn those fucking books under them!
    I also suffered PTSD for almost a year… There is an end in sight for everyone. I was lucky mine was only a year.
    Keep writing Amy. I’m loving it!

  2. And meant to say understand embarrassment, guilt, fear, and judgement. Not comparing mine to yours at all but I feel you.

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