Therapy and Fighting

I hesitate on this post because it's a bit personal for me and children I love. It gets into a bit of nitty gritty about what the journey is for a parent fighting to keep a child healthy. It talks about specifics of care. And I do believe in protecting my child. Which is why I don't share details about life before our family. But I also  know how isolating it can be to be to be on a journey like mine, and maybe there are more out there like me, fighting similar fights. And the only way to not be alone on a trip is to pick up hitchhikers or join a caravan going to a similar place. So, if you will try not to judge me, please, hop in or follow along. We are all in this together if you want to be.

Are there benefits to having a traumatized young child in therapy with an experienced and compassionate trauma and attachment therapist? Yes. For sure. Two or three months in, is one of those benefits greater emotional regulation? No. Not yet. If anything, digging up big feelings from the past make the week in between therapy harder. My days are a mix of home school joy and responding to lightening storms. It is constant, relentless and Tsega's therapist and Brady's dedicated team of EI therapists are trying to trouble shoot ideas for daily helps for the toddlers so we have some semblance of functionality.

Lovely ideas thus far mostly for Tsega and some don't hurt for Brady, either,
1) more exercise, which is harder than it sounds for toddlers when it's cold outside still. I am considering trying Tsega on my treadmill today.
2) Vitamin C and GABA supplements to try to combat the raging cortisol. I had read recent studies linking Vitamin C in high doses with helping reduce cortisol, but I hadn't stuck with any resolve to try it. Well, I am back on the wagon and going to supplement this little guy 'til the cows come home.

Can you make out the bottom phrase? "...it has an inhibitory effect on the firing of neurons and supports a calm mood." I've read praiseof this supplement so it's a worth a shot.

3) Another idea, which sounds silly in its obviousness is to expect less (or zero?) cooperation during meal times and feed him high protein snacks constantly through the day, upon request. Hunger/food and meal times are massive anxiety triggers and Doc suggests being apart of the solution, not try to force things. Keep hunger away, and do not worry about Parenting Magazine coming to do a photo shoot during dinner.

4) Making his room more a of refuge, trying to find a safe way to give him a place to get reconnected to his body, perhaps a tent that is small, dark, comfortable where he can get away from the noise and social stuff in the house, or a lycra spacial body bag or hammock. 

6) Being outside a trigger for T, so before leaving the car, sitting with him and pointing out to to him where we are going, showing him safe spots, going over the plan for the next hour or so. Bringing a picnic blanket or small cushion that will be a "home base" so where ever we are he knows we can return to "home base" with one of his parents and not get lost, etc. Also when exiting the car to go be outside, starting out without fail to have him in the Ergo backpack carrier to let him observe his surroundings and get acclimated before putting him down on the ground. Wait until he asks to be put down.

These are all lovely ideas, and they feel like the right thing to do. Even in practice, so far, it is hard to notice if anything really helps.

Parent to therapist: It feels like every time my child cries, which is in response to just about everything, it is aa emergency. There is no little problem, it's all a huge catastrophe, it's life or death, even if it's an apple stem or that I reached the wrong book.

Therapist to parent: That is because when it was life or death, when he cried big cries, no one came. When he is scared or upset, it still feels like life or death, and he is still not sure, to this day, that someone is going to come and help those feelings go away. He needs you to come.  And he needs you to tell him when you do respond to another melt down that you are hearing him. Say,"Look! You cried and we heard you and knew you needed us so we came! We will always help you! When you cried you showed us you needed help. We can use our words too, you can tell us 'Mama, please come!" Validate him, keep talking.

Parent to therapist: I know. We try. But it's all day, and he's not the only kid.

Therapist to parent: I know. Do not give up, and know when you are doing your best.

So, we are in the trenches. It's humbling to think how much there is ahead of us a family to meet not only this child but every child's particular emotional, psychological, academic and who-knows-what-else needs. I waffle between feeling good that I am indeed doing my best and thinking Holy crap, are we going to survive this? Are any of them going to become criminals or addicts? This might be as easy as it ever gets...And those of you who are parenting children from hard places know I am not joking in my worry about the future. This truly may be as easy as it gets. Sometimes, it gets harder, not better.

Fun fact One: I was working on writing this post and it was frozen in the draft folder, as it wasn't going anywhere when I had a nasty conversation with insurance this week. They led me to believe they were covering therapy with this specialized doctor. Turns out, not really. I have to stop taking my kid to the one therapist out of dozens I called who said she thinks she can help him. That is, I have to stop taking him to see her until I get insurance to stop being a $%&#@ jerk. I have to fight them. I still haven't won the battle for OT, and now I am fighting for trauma therapy.

The funny-sad thing is, the process I need to go through to hopefully get insurance to cover this therapist? I did all the work. Months worth of calling therapists with specific questions to see if they would be appropriate for my kid and his symptoms. It was no after no until I found her. But I didn't write any of that down. I didn't document it.

Now, I have to start from scratch. I need to get a list of providers that are ("in network") which I have learned means "People willing to take a lower rate that insurance has negotiated to pay them." I need to call every single therapist in a twenty mile radius, and document that they cannot treat my son because of t,u,v, x,y, and or z, and then demonstrate to Insurance "Look, see? None of your people can do this. You need to cover this doctor." I did this exact thing several months ago, I just was stupid about it because I didn't keep the records of everyone I called, though I am sure not all of them were in-network either. To have a shot at getting the coverage we seek, after I give Insurance my list of their inappropriate or unavailable therapists, and they realize they should indeed cover the doctor we've been working with, then they will throw a fit because they want her to lower her rate and want to pay her less. And she will not negotiate her rate, and then they will say "OK, we will pay her rate, but only approve six or ten sessions at a time, and you have to reapply every six or ten weeks, and we, Insurance Overlords of Human Sorrow, will make your doctor's life a living hell. You have to allow us to scrutinize your care and records of treatment continually forever for this patient, and we look forward to trying to stop paying for her fee and hope she and you, the patient's family, tire of the paperwork we will require so that way we can put this all behind us."

This is the process ahead of me. I am daunted. I am feeling discouraged. But then I remember:

Fun fact Number Two: Don't the wizards geniuses over in Insurance Land realize that treating a child with severe PTSD early, we could stave off years of more expensive therapies, continual need for medications, medical interventions, residential psychiatric bills. ER visits?  Don't they realize I am trying to save them, us ALL grief? My kid needs help. It isn't going away. As he gets bigger, so will the demons. And then my son, and the penny-pincers in Insurance Land shall be up a creek with a very expensive paddle.

Now is the time. She is the therapist. I have to find a way to make it work. But next week I can't take my child to the doctor who has been able to  reach him. Next week, instead of going to his appointment with her, I will be finding a sitter so I can sit with a phone and a spreadsheet and a prayer that I can fight this stupid fight.

Here is something you can all ponder with me: Why must parents with children with different needs, be they mental, emotional, psychiatric, physical, developmental or combinations have to invent the wheel?  Every kid is different, even ones with the same diagnosis. And all of them are on different insurance plans, all have unique needs, so every single family who wants their children to get the maximum support and help they need must forge through the jungle with a butter knife, trying to clear a path.

Screw this butter knife, I just want to burn the trees to the ground. The more time I spend trying to reinvent the wheel for my child, the less time I am connecting with them and teaching them.

I don't want to be a fighter. I want to be a mother.

Yeah yeah, I know. But maybe that is just part of the job description. 


Jamie said...

i am coming along on your caravan, if only to light the match to burn those @@##ippin' trees down!! horrible, and terrible, and I am so sorry!!!
the tent thing for T is a great idea, Gabe used to have one, and loved it, the lycra sock rocks!!! super-duper rocks, sew him one out of satiny fabric with no ends, and watch out the slithery-ness will kill you, bring it everywhere, we did for a long time!!!
5HTP is also good for moods, we use it all the time, notice when we don't too, and the high protein is a huge factor, all the time, partly why most of us are Gf now, the gluten triggers those "starving" feelings by raising blood sugar and dropping it fast, stay away and stick to cheese, meats and hard boiled eggs!
You are doing great, and you are the best mom for the kids, and when you need help, please ask, we would love to pitch in when needed, just need to know what you need,' cause we love you!!!

Adriana said...

I read your blog regularly & this is the first time I've ever commented. I'm a trauma therapist in South Central Los Angeles. This is the stuff of my dreams - you are the kind of parent I wish for my clients who have a multitude of complex traumas. You are doing it all right. Every child should be so lucky to have parents like you and your husband. Hang in there.

Maggie said...

Good luck in your quest to get the therapist approved! Reading this post really made me sad for all of the children who have parents who simply do not have the time, or even the knowledge to call of these therapists and fight with insurance companies. I truly wish it were easier. Again - good luck!

Shrijnana said...

Insurance... ugh. I know from our own experience that those can be such a headache. I hope that gets sorted out as quickly as possible.

Do either of your youngest children have needs that can be helped by the local preschool? Public schools are required to provide intervention services to fill the gap between EI and kindergarten (it doesn't matter if you never plan to enroll them in their kindergarten). Both my children went to our school's preschool program, where there were fairly intensive OT, PT, SLP and ESL services for kids who needed them. I've seen them help with things like brushing therapy, strategies for self care routines, and dealing with sensory overload. It isn't a replacement for trauma therapy, but it could be a resource to give you a few more professionals in your corner.

Barb Aloot said...

Yes, you've nailed it all. I'm thumbing a lift. Thank you. Keeping fighting the good fight - you are one smart and tough mama bear!

findingmagnolia said...

In my experience, insurance decisions are made outside the bounds of logic. Our insurance is great about covering therapy, but they are giving us the runaround about covering an assessment. I don't know how much time our therapist has spent on the phone with them - hours, probably - and now they finally tell her she needs to submit a form, a form that no one she or I spoke to in our hours of phones calls has mentioned before. I'm standing with you in fighting insurance solidarity. It's no fun. We shouldn't have to. But we do.

Keep fighting, mama. This matters.

Love and hugs to you.

Inspired said...

Your doing great!

As a patient who needs both emotional and physical and much more treatment I can say the insurance battle is never won. Once you get it figured out a new policy change comes or a new regulation is introduced so you start over again and again.

On the positive side being a life-long patient the documentation of my "issues" would fill a library, therefore, nearly impossible to deny the "issues" exist.

I can't offer much in the way of solutions, but I do think your amazing.

Kate and Jeff said...

Staci, I am right there with you. It is a constant, uphill battle for services, medication and whatever else for A. We regularly joke that various people could come stay at our house for a day...then they would see what he needs. I give you credit for sharing...I don't post much about it because I don't want to relive it. You are so strong and are doing a great job for your kids. It was recently suggested to me to get a case worker through our insurance agency...that may help for you too. Then you speak directly to them and do not have to deal with the limitations of standard member services.

Kate and Jeff said...

forgot to add that A loves something called a body sock...they even have a swing made out of it!

Kyra said...

That is soooo frustrating. I hate insurance companies. I love the tent idea and the portable home base idea. Keep fighting, you may not see progress immediately, but when you look back in six months, the progress will be there.

Maria said...

Why, oh WHY does your country not have public health care!? It continously baffles my (Scandinavian) mind why you don't all rise up in protest and demand that your government fix this for you.

It sounds horrible what you have to go through. I hope this second round of contacting therapists will be easier for you, though it doesn't seem like it from how you describe it :( And I got to say I am really impressed with how much stuff you are able to cope with. Good job! :)

● C E L I N A ● said...

How Brave of you to share. I've been following along for ages and just want to say what an inspiration this all is.

I'll pray for your little ones, and your family and for the help you need.

Tesi said...

Love you. I have no doubt you've helped more than you can possibly comprehend. My prayers as you fight the many battles ahead.

Shay said...

I love reading your blog. I may not comment all the time, but I am sitting here loving your life. I tell all my friends about you and your beautiful family and the wonderful things that you are accomplishing. Thank you for the Vitamin C and GABA info. My middle boy definitely has his ups and his downs...wow! His aggression is what scares me and how I help him with that. I am going to give these two things a try!
Thanks Staci for being you and wearing your cute designer jeans and for making a difference in our world! ;) I wish I lived by you again to interact with all your beautiful children! They all seem so amazing!
Best wishes and Much Love!