reflections related to disability advocacy, family and (needed) cultural change
Saturday, March 22, 2008
Disability and Stress 9-1-1: Tips for Managing in a Crisis
When things are not working for us or our kids we can be pushed into crisis mode--and these crises can be short-term or long-term. We can be in a terrible panic and at the same time we have to make sound decisions and keep on living. These tips have been helpful for me, I hope they are for you as well.
Talk with friends. It surprises me how often people who are struggling will say, “Oh my friends can’t help me with this.” Some jobs do have specific parameters and specific job descriptions—for example, if you don’t have a fire, don’t call the fire department—but friendship should be much broader than this.
It is true that your friends probably won’t be able to rescue you or your child from their bad teacher, IEP, job or health issue. Many friends could understand that you are struggling though, and some might actually be able to offer perspective even though their own lives are different from yours.
Friends who can’t make the leap to understand your disability issues or struggles should not be discarded out of hand. The friend that can keep you up on your soaps or on what Dr. McDreamy is doing, the friends you exercise with and the friends you went to high school with can—and are often happy to—provide small distractions which can be very refreshing.
By the same token, avoid toxic people. Naysayers and people who cannot value you, your child or your decisions will only make your burdens heavier. If the toxic person is your parent or someone you feel you need to support set boundaries around how much time you spend together and what you tell them about your life. In a crisis avoid them entirely.
A toxic person will NOT become non-toxic because they SHOULD or if you just explain your situation. Protect yourself and your family. If they change they will come to you with understanding, until that happens do not allow them access, they will sap your strength.
Vent, don’t stew. When you are discussing your crisis notice the way you are feeling. If you are feeling lighter you are venting—this is good. It will help clear your head making better decision-making possible. If you are feeling more and more upset you are stewing—this is bad. You will leave the conversation worse off than you were when you went in…be careful!
Seek professional help. Professional counselors, physicians, psychiatrists and psychologists can be very helpful to people who are navigating a short or long crises. Do not deny yourself help when you need it.
Support groups. These get a bad rap sometimes. People think they will find bunches of sad people feeling sorry for themselves and each other. This has not been my experience at all (thankfully!) I have learned most of my advocacy skills and disability-related problem solving skills from other parents and I met many of these parents in my local Down syndrome group and school district parent group. These are certainly not my only supports, but they have helped me in many ways over the years.
Distract yourself. Engaging in something other than the problems at hand for bit can be incredibly helpful. Watch a movie, go for a walk, clean the garage, garden, read a book or magazine (or a blog!), mop your floor.
Be smart about this—this isn’t full-scale avoidance of necessary work. It is just a small “snack”. You might not want to take on the whole garage—just a corner. A little time away freshens perspective, too much will just expand your burdens.
Create order. Terrible situations are only worse if you can’t find your keys. Following routines and keeping things as orderly as possible is MORE important when things are falling apart. The sight of clutter and the struggle digging through things and not finding things adds more panic and adrenaline to a crisis. Don’t beat yourself up about this, just start hanging up your coat in the same place and keeping your keys in the same pocket. When you get the chance to straighten something out, do. These little improvements reap rewards of calmness. (I am the worst at having my house explode in paper and dirty dishes when things go awry—little improvements really pay off, I promise!)
This is also something you can ask certain friends to help you with sometimes. Even if you can’t ask anyone to clean or organize your paper piles, have your friend type and laminate a list of phone numbers for you, or remind you to charge your cell phone and put gas in the car.
Use stress-reduction techniques. Deep breathing, yoga, exercise and more can make people feel calmer and calmer people cope better.
Gather information. Know what you or your child needs, know your diagnosis, understand as much as you can about available options, learn about the laws and policies that govern your situation, investigate other options, etc. Understand your situation so that you are as equal as you can be at the decision-making table.
There can come a time where more information won’t make your choices clearer—when you get to that point STOP! It’s time to employ a different strategy!
Strategize. When approaching a problem think about who may be involved, what their point of view might be and how to address them. Look for allies. Use the information you have, use the advocacy skills and negotiation skills you have learned or bring in someone to help you. Think about your negotiables and non-negotiables. It may be imperative that your child be hospitalized in your home town for example and not matter to you that they will be on an adult floor—or vice verse—for example.
Hold on to your vision. Clarify, strengthen and build your vision for the future for yourself and your child. When a system does not meet your needs this is not your failure, your child’s failure, or your vision’s failure. You may eventually choose an imperfect solution within a system, but this is not because you were wrong—and you are free to choose something that is a better fit at a different time.
Let yourself enjoy the other aspects of your life. This can be terrifically challenging, but it doesn’t have to be huge—sneak a spoonful of the hot fudge from the fridge once in a while, shower with your favorite smelly soap, find things to laugh at wherever you can. Don’t skip birthday parties or nights out if you can help it.
Even if your child demands your presence now they will one day feel guilt if you limit your life too much.
Avoid resentment. Resentment is a very ugly and consuming emotion. It comes from feeling like a victim so make choices where you can and when you think or talk about those choices say, “we chose to do this because…” instead of “we had to…” or “we couldn’t...”
Cultivate other positive experiences. Just because things are going badly at school doesn’t mean they have to go badly everywhere. Enroll your child in a course at the local museum, join a theater group or get a season ticket, take dance, take up cooking or any other thing that will be fun and successful. Look for small things if you need to—really liking tea, or petting your dogs, or taking pictures counts!
I hope these ideas give you some food for thought and some ideas to relieve a little of your stress! Please feel free to share any additional ideas in the comments--you never know who you could help!
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.