This word is usually associated with things that are horrible to experience, such as a car accident or the sudden death of a loved one. What follows are emotions like shock or denial because of the event. Your life could have been going along smoothly, and then suddenly something happens that literally turns your world upside down.
Have you ever considered that as a caregiver to a child with special needs, you have experienced trauma, repeatedly, for weeks or months or years on end? Events that have turned your life upside down, have stopped you in your tracks, have caused shock, denial, fear, anger, resentment, or grief?
Honestly, it wasn't until I helped to organize a meeting for a local caregiver support group that I realized how much trauma I have experienced as a mom. I went through years of uncertainty trying to figure out my daughter's diagnosis, trying to cope with the fact that her path would be different, trying to get her the right help. Hours upon hours on the phone, going to doctor after doctor, trying diets, evaluations and assessments, dealing with challenging behaviors where I had no idea what to do, grieving over the uncertainty of her future. And then with my second child, I went through the same uncertainty and fear as I sought his medical diagnosis so he could receive the right treatment. And then with my youngest, it was the shock in the hospital, hours after his birth, where we were given his diagnosis, and I knew nothing would be what I imagined for him. These situations I've faced as a mother, if you really look at them, have been traumatic--they have brought me to my knees and kept me from experiencing what some might call a more "normal" motherhood experience.
An article I used for that caregiver meeting explains trauma so well. The author, Eileen Devine, LCSW, shares a story of how one of her clients describes her life that week with her daughter who has behavioral challenges associated with fetal alcohol syndrome. Devine says, "Although the week had been particularly difficult, in reality the last two years, overall, had been incredibly difficult." When I read this, it really struck me--I realized I have been experiencing traumatic event after traumatic event for YEARS. Yes, some weeks were harder than others, and some days, but if you add it all up, it equaled a long stream of traumatic events that, when I actually stop to think about it, can't even believe. How have I even made it through all that I have? Am I really doing okay, or am I just in "survival mode," going day to day but not considering how these traumatic events have really changed me or affected me in some way?
I think the difficulty that caregivers face when it comes to trauma is that once that big event happens--the one that changes things forever, NOTHING EVER SLOWS DOWN. You are suddenly given this new road to take with your child, and you have to keep going somehow. Your child is depending on you to obtain the right treatment, services, school placements, medical care, therapies--the list goes on. When do you ever stop to think about how what you are doing as a caregiver is really affecting you--how these traumatic events are piling up, day after day, year after year?
Devine says, "I don't say this lightly, but in parenting children whose brains work differently, each is separately living through, on a daily basis, a traumatic event. It's no wonder that these parents frequently describe being depressed, anxious, and on-edge. It's no wonder that they might find themselves physically ill much of the time, with ailments that rarely seem to abate or resolve...Many parents are left wondering how they ended up in such a dark place, and how they might ever extract themselves again."
It's important to point out here, that this "place" Devine mentions is actually what she calls "caregiver burnout," which I will discuss in a future post. But I share her thoughts because I want you as caregivers to see how these traumatic events really do add up and can lead to this burnout.
Another important point I want to stress here is the sadness I feel when I consider the fact that the trauma I have experienced in my life has largely been from the health challenges my children have faced. I don't like thinking about it that way--that because of the challenges my children have been given, I now have gone through serious trauma. This negative view is not something I want to adopt as their mother. I think this is why it's crucial that we see our child for who they really are and not just the disability or health concerns--they are our children first. As caregivers, we are tasked with helping our children navigate life as they also deal with the symptoms that come from these diagnoses. This asks a lot more of us as parents, but what parent isn't willing to do everything they can to help their child? Make sure you are seeing your child first and the diagnosis second so you don't fall into anger or resentment, or blaming your child for what you have to go through with them--it's NOT their fault.
I remember the trauma I went through after my youngest had his palate repair surgery. It was the first time any of my children had had surgery, so I was a wreck, to say the least. It was rescheduled twice because of emergency operations that needed to be performed by his surgeon, so we were pushed back by several months already. The day finally came, and it was at a horrible time for all of us--right in the beginning of a new school year. The surgeon didn't give a lot of details about how the surgery was going to happen, and he explained that the recovery was usually just one day in the hospital. I really didn't think it would be too bad, based on what he told me, and based on the fact that I didn't know anyone who had been through this before--all of this was very new to us.
The surgery was longer than he said it would be--my husband and I waited in the hospital with all the other worried parents and families until our son's number moved down the screen. And when we finally got to see him, I nearly broke down. His face was swollen and he had to breathe with a tube. He looked absolutely miserable and I so wished I could take all his pain away. I asked the surgeon more about how the repair was done. He actually drew a picture, showing that he removed both sides of the existing palate in his mouth that never fused together, sewed them together down the middle, then stretched it out to the gum line, inserting stitches all along the gumline. So he had stitches down the middle of his palate and all around the gums. The very thought of my baby going through this made me cringe. But I tried to remain hopeful--he said the hospital stay would only be one night and he would be feeling much better.
Well, that didn't happen--one night turned into three and my little baby still didn't want to eat. When he finally got at least one ounce down from a bottle, the doctors reluctantly sent me home, but told me to watch for signs of dehydration. Those next few weeks were rough getting him to eat, and I came close to bringing him back to the hospital. But we got through it, and with the exception of a small fistula, or hole, in his palate, (which was whole other traumatic experience in itself) he is doing just fine.
Those days in the hospital with him were certainly traumatic. Every time I had to return for follow-up appointments, I had to drive by the hospital. Just the sight of that building triggered horrible, fearful feelings. It took about 2 years before I could drive by it without fear creeping inside of me, taking me back to those long, difficult days trying to get him to eat. Add to this the dozens of other traumatic experiences I've had with him since then and you have a recipe for disaster. Trauma after trauma after trauma, with no time to regroup or "go back to normal." My normal was going to be filled with trauma and there was no escaping it.
Going back to last week's post about accepting our role as caregiver, you could add one more point to the list--accepting the fact that trauma will be a part of your life now. But how can we deal with trauma in a way that won't lead to burnout? Here are some things I think helped me get to where I am now:
1. Talk about what you are experiencing with others--this can be a great support system.
I mentioned the hours I spent on the phone trying to get help or answers for my daughter earlier in this post, and that is no exaggeration. Those hours on the phone weren't just with doctors, teachers, or specialists--they were also with my family and friends, who became a huge support for me during that time. I pretty much talked everyone's ear off during those early years--I was trying to figure things out and process what was happening, and I was lost! Talking openly about my struggles (or what I would now call "traumatic events") with others is really what saved me and gave me the support I needed. If you aren't talking to others about what you are facing on a regular basis, start now! You can't keep all of this inside. Writing about it is another great tool.
2. Don't dwell on the past too much--look at where you are now.
There can be a lot of painful memories associated with being a caregiver--memories that, if you dwell on them for too long, might not allow you to appreciate where you are currently. I did a lot of journaling, and then blogging, back in my earlier days as a mother. When I read those entries, the tears start flowing, but not because I am sad--because I am grateful for how far I've come. I can look back and see what I've been able to get through, and it is empowering to me. It gives me confidence to keep going forward. Maybe you are right in the middle of those traumatic experiences and can't begin to imagine looking back yet--keep going so you can. And even look back on yesterday, or a week ago, and see what has changed. Try to find those little blessings and miracles that got you to where you are.
3. Make sure to take some time for yourself.
Of course this is easier said than done. But it's absolutely essential to dealing with the many traumatic events that caregivers face on a regular basis. For me, in those earlier years, it was exercise. I had to go to the gym or go for a walk every day to feel okay. Figure out what will help you deal with your situation and make it a priority. You are important, too!
The traumas that I face as a caregiver now have calmed down, for the most part, or maybe I have just learned to adjust to my "normal." I continue to talk to people, to write. I continue to look back on what I've been through and realize how far I've come. And I continue to take time for myself--right now, it's pursuing a graduate degree.
Some questions to consider: What traumatic events have you experienced as a caregiver? What has turned your life upside-down? What can you do to deal with traumatic events in a healthy way?
As caregivers, we can't escape the trauma that will come into our lives, but we can view them as stepping stones on our journey as we learn how to care for our children.
Next week I will share my thoughts on a new topic related to caregiving: relational stress.
Link to article by Eileen Devine: Managing the Toll of Caregiver Trauma
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