We went to the Emergency Room today. Again.
I’m not really sure if it was the 47th time or the 74th time. It’s a “score” I’d rather not keep.
It has been a long time since we’ve had to go to the ER, but early in our journey soon after my kiddo’s adoption, we were frequent fliers.
As for inpatient stays (meaning at least three to four days in a psychiatric unit), we’ve done that exactly ten times now over the past eight years. Those have been a little easier to keep track of, but now that we’re up in the double digits, I’ll probably stop counting.
You see, my son has a very serious mental illness called complex developmental trauma, known more widely by most by its cousin mental illness PTSD, which most people associate with combat veterans and those who’ve experienced a one-time traumatic event.
My son’s complex developmental trauma stems from a variety of early childhood traumas: neglect, abandonment, abuse, and language deprivation (he was the only deaf child in an orphanage where no one used sign language); growing up in an institution instead of a family; the trauma of an almost four-year-long international adoption process where I was forced to re-abandon him over and over each time I came to visit and left him there in the orphanage, wondering if and when I’d return; and then the trauma of adoption, immigration, and loss of his birth country and culture.
By the time I brought him to live with me, he had been through too much for anyone to deal with and come out of it both alive and mentally healthy, let alone a ten-year-old.
When children experience trauma, it changes their brain structure and chemistry so that they can no longer exist like “normal” people do. They live in a constant state of fight, flight, or freeze, in a hyper-vigilant state of survival. It is possible to heal over time, and my son has had a lot of healing for sure, but the progress is not linear, and there are days when he just cannot cope with overwhelming stress.
Sometimes I really don’t think the people around us have any idea how high the stakes are for my family and how terrifying it is to battle the Trauma Dragon daily, not knowing when or how it will strike next. Suicide is the second leading cause of death for people his age, and statistically, my son is in a very high-risk group.
So I do the best I can, pray the prayer that every mother of a child with a life-threatening illness knows by heart, and hold my breath during the times it feels like we’re drowning.
So far, we’ve come back up for air each time.
Just. Keep. Swimming.
I’ve learned over the years that it’s best not to measure progress by whether or not my son is still HAVING mental health episodes related to his complex developmental trauma or not, but rather, to measure what I call the “LIFT” factors – the length, intensity, frequency, and triggers that cause an episode. We’ve seen tremendous reduction in all four of these, and for me, this is cause to celebrate! I don’t think it’s likely that he will ever be 100% “cured” from a developmental issue that has changed his brain structure and chemistry; but for sure, he is gaining more strength, courage, and skills to grow and heal and become an amazing super hero living successfully with his Trauma Dragon.
Of all the ER visits, today’s visit was pretty low-key overall. I had to call police at one point before we went to the hospital – the officer was VERY good about being patient, flexible, and trauma-informed. Not all of them are, so we were lucky.
When we got the the ER, most of the staff were also helpful and patient. One nurse was awful. Maybe she was having a bad day. She didn’t make ours better, that’s for sure. But knowing that we weren’t going to get very far with her, I simply went over her head and got some help from the charge nurse, who was very supportive and patient.
The whole ordeal today lasted only about four hours, which is the FASTEST visit to the ER that we’ve ever had, considering my son’s sign language interpreting needs and all the ER things that must be done before a discharge or admission. It was all relatively smooth, and we are home safe and sound, for now.
My kiddo is in his own bed, asleep, his faithful dog at his side. And now I can breathe again.
Here are some things I would like our friends and family to know… really, I think everyone needs to know these things about kids like mine:
- Yes, this is hard, but I’m not asking for your pity AT ALL. I am writing this article to share what we are dealing with and spread some awareness about complex developmental trauma mainly because the world around us just doesn’t seem to really get it yet.
- My son is an amazing, creative, intelligent, sensitive, funny, sweet young man who is an absolute delight about 95% of the time when he is stable and healthy. We have a wonderful relationship, and I love him more than anyone else in this world. He is healing and growing, and I’m so thankful for his amazing progress. I have hope that he will continue to heal and grow, but the path is not linear, and there will be setbacks. We are strong, and we aren’t giving up.
- My son is doing the very best he can. He has good days and bad days. He can’t help it, no matter how many IEP goals are set or how many positive pep-talks we give him. He has complex developmental trauma, anxiety, and depression. These are documented mental illnesses that make every day life hard. Expecting him just to “get over it because there is so much to be happy about and live for” is like asking a person with asthma to just “stop complaining because there is so much air in the room to breathe.”
- Yes, if you are wondering, we have tried many, many different therapies, therapists, counselors, case managers, doctors, psychiatrists, specialists, medications, natural treatments, nutritional supplements, etc….. so please do not offer medical advice (or your multilevel marketing nutritional product, oil, or supplement) that hasn’t been asked for. Especially two or three times, after I’ve already politely declined. If you’ve never walked this road, you do not know what you are talking about, so zip it. Please.
- It’s not my fault…at least not all of it. I’m not perfect, but I’m a good mom, and I love my kid. I’ve also made lots of sacrifices and worked very hard to help my child grow and heal from his trauma. We’ve got a solid relationship, and I’m incredibly proud of how far we’ve come.
- On the other hand, I do understand and accept my responsibility for the trauma of adoption and the racial/cultural trauma of raising a brown, Deaf, Guatemalan kid in a white, hearing, American family. I’m doing what I can to address his need for racial and cultural mirrors while also navigating the challenges of his anxiety and reluctance to try new things or be around new people. With my limitations of shared personal experience, I will never be “enough” for him, and I know this. It would also be so much better for him to be raised by his biological mom instead of me, if she were able to do that. But she wasn’t, so here we are. I really do try my best to be as supportive and affirming as possible of all his intersectional identities. Not perfect, but doing my best.
- I am so incredibly thankful for the wonderful and caring doctors and support providers that we have in our corner right now. Unfortunately, I also have a lot of anger towards many of the so-called professionals we’ve had over the years who were supposed to be helping us but simply shrugged and said they didn’t know what to do, or worse, blamed me for my son’s mental illness. I am the one person who hasn’t abandoned him and the one person who still believes in him. We are looking for allies, not more bullies, and especially not adult bullies with fancy letters behind their names. I’ve fired several doctors and therapists and moved from school to school looking for people who understand trauma and are willing to help my son with his complex needs. We’ve been disappointed time and time again. So if I seem resistant to more help, professional support, and advice, I have good reasons for this.
- You don’t have to whisper behind my back about my child’s mental illness. I would rather that you actually talk to me about it directly. I am truly mostly flabbergasted at the LACK of talking about it that I’ve experienced, which feels cruel in a way. If my kid had leukemia, for example, most compassionate people would be sending us regular encouraging messages of hope, asking how we’re doing, if we need anything… maybe even dropping off a casserole. With mental illness, it’s like my kid has leprosy or something. The stigma and shame are very real, but totally unnecessary. Yes, this is a very serious life-threatening illness. But it’s not catching – and he’s not a danger to YOU at all. If you ask me how I’m doing or how my son is doing, I will be grateful, not embarrassed. We have absolutely nothing to be ashamed of. Those who gossip and spread nasty rumors and make judgmental assumptions about us DO have a lot to be ashamed of, and trust me, those who do these things aren’t as good as they think they are at being sneaky about it.
- I will forever be grateful for the few rare friends and family members who have reached out to me on a consistent basis with comforting words and support in the form of cards, letters, and phone calls – even some who have sent grocery gift cards and a cleaning service when I’ve been too exhausted from the stress of constant doctor appointments and emergency room visits to cook or clean. I’ve been told that people don’t reach out because they don’t know what to say. Really, it’s not important WHAT you say, as long as it’s genuine and from the heart. So just approach me, call me, send the letter, bring the casserole… really ANY little gesture of kindness and support is so much appreciated. On the other hand, it isn’t all about US, and we would love to know more about YOU, too! Sometimes living with mental illness is very isolating… so please share your interests, joys and sorrows with us, too!
- If you made it all the way to this final bullet, thanks for reading! I hope that this information will help you understand my family and other families like mine who are dealing with complex developmental trauma. If you have any questions at all or would like to know more, feel free to reach out to me at Support@WingBuilder.com If you are the parent of a child with complex developmental trauma, feel free to join my support group here: Families in FLIGHT: Family Love Inspiring Growth and Healing TransformationIf you are a teacher or work in a school, I have another support group just for educators you can join here: Teaching With Connection
UPDATE on July 20, 2018: This post was written immediately after our most recent ER visit, so I wanted to let you know that we are home and doing FINE right now… AND…. A specialist doc just gave us a significant medical diagnosis that is underlying the recent irritability that triggered this particular meltdown, so a BIG mystery has been solved! I’ll do another blog post soon about why it’s SO IMPORTANT not to assume that everything going on with our kiddos is always 100% because of anxiety and trauma!!!