It’s been crazy at my house lately. I’m talking off-the-wall chaos. While I do need to vent a bit, that is not the purpose of this article. Rather, the experiences of the past couple of weeks have highlighted the importance something I call the social safety net. So, I wanted to talk both about what we have been going through at “Casa de Chaos” (my house) but also highlight how our “social safety net” allowed us to manage the chaos and deal with stress that would have overwhelmed us at any other time.
I. The Social Safety Net Defined
In my new book, The Special Needs Parenting Survival Guide, I discuss ways in which parents of special needs children can manage better and improve their quality of life. One of the cornerstones of my system is the “Social Safety Net.”
To create a social safety net, parents identify, recruit, train and nurture key people who can provide needed support for them and their child. The more key people added to the net, the more resources the family has at their disposal. The more resources at the family’s disposal, the more stress they can manage because the stress gets dispersed throughout the net. I recently was reminded of just how powerful this can be.
II. The crazy 2 weeks at my house
For those of you who don’t know my background, I have five children with special needs. Two boys with Autism, an adult son with ADHD, a daughter with IDD and another daughter with significant health issues. About a month ago, my daughter with the health issues had many of her conditions flare up. We tried everything we knew might work, but to no avail. Two weeks ago, when she was unable to keep any food down and was losing weight she was admitted to the hospital.
For any family this is a big deal, to have a child in the hospital. However, with the significant needs of the other 4 children, there are several added degrees of difficulty. My wife ended up staying at the hospital with my daughter and I stayed home to take care of the kids. On top of this I had to juggle issues at work, with my practice as well as other medical and school appointments for the other kids.
The situation was terrible. Each day we figured my daughter would be discharged, but then something else would come up and then stay would get extended. For a week this happened and then she was discharged. Unfortunately, after a couple of days, her symptoms returned worse and she went back in the hospital for another week (this time to get a feeding tube put in). More juggling of schedules and responsibilities.
With one parent out of the picture (at the hospital) we were unable to engage in our usual parenting teamwork to get things done. Furthermore, having a parent and a child out of the home added stressors to all the other kids (based on changes in routine and worry). Let’s face it…no matter what‘s gone wrong…life goes on. The laundry needs doing, food needs cooking. Life doesn’t stop for a crisis (no matter how much you might want it to do so). If it were just Lorrie and myself, our resources would have been overwhelmed. I shudder to think what might have happened.
Thankfully, I am a therapist who practices what he preaches. For years, Lorrie and I have been building our social support network. When everything went pear-shaped, we were able to draw on the resources of trusted friends and family to help disperse the stress and get things done. It was still hard… terrible really, but the situation became survivable because of the support of our network.
III. The key players and why it worked
So, here are some of the people who helped get us through this trying time:
My mom – she helped do laundry (did I mention our washer is broken at this time? Yeah,when it rains it pours). With 5 kids, laundry piles up quickly and without Lorrie around, I couldn’t easily get to the laundry mat. She also was there to just talk and let me vent. She and my step-father drove supplies or my wife to the hospital (changes of clothes, activities, etc.). She also wrote some great letters to my daughter to help her deal with her anxiety and worry.
Michele – A good friend of the family and fellow therapist (http://www.michelepaiva.com) not only kept in touch with my daughter through texts and phone calls. She put together several care packages. She even gave me a chance to sit and talk, putting the worry aside, for about a half hour in the middle of a particularly bad day which was perhaps he greatest gift of all. Her thoughtfulness and support were and are outstanding.
Angela – Our foster care social worker. She helped deal with various scheduling and school issues. She answered emails and diverted some of the usual BS we have to manage freeing me to focus on what I needed to do. She came over and sat with the kids when I couldn’t get home in time from work or other obligations. She went above and beyond.
Rand – Another therapist and colleague. He also let me vent. He even took over therapy on some of our co-therapy cases…freeing me up to do my parenting thing without guilt. He was a kind voice of support and reason.
Dr. Chang – Our allergy specialist. He helped coordinate doctors within various departments to make things run a little smoother at the hospital. He didn’t have to as his specialty wasn’t really needed for what was being done. Despite that, he stepped up and helped sort things out.
Anthony – A co-worker and friend. He kept me in the loop with stuff at work and ran some interference as I tried to juggle parenting and work.
My son, Zak – He stepped up and helped with housework and helped keep things stable when I couldn’t be home. He really stepped up his game and I am grateful.
My sister — She also let me talk and vent. When I asked her to run some stuff up to the hospital he immediately said yes. When it turned out she couldn’t do that, she sorted at the situation and arranged for my Mom to do that without involving me (other than letting me know about the change in plans). She saved from having to solve yet another problem and helped alleviate a little bit of stress.
These people stepped up and helped…many without my having to ask. Why? Because Lorrie and I have spent time educating them as to our needs and our “reality.” We spend time nurturing and renewing connections with these people (and others) so there is not a sense of “using” them. They are valued friends. The work that made things work the past two weeks started years ago and will be on-going (because I am sure there are more crises coming down the pike).
To all the people in my net…I am filled with gratitude for all that you do. Your help and support is invaluable and will be returned someday.
IV. Make connections and disperse the stress
With “neurotypical” families, the social safety net often naturally develops. Family, friends, and other people just seem to connect and offer support. When the family has an exceptional child, these natural supports are often ill-equipped to provide support. They typically are inexperienced with the child’s needs (much like the new parents). This can leave the parents isolated and without support when they need it most.
To combat this tendency towards isolation, I counsel my parents to identify their resources and actively train them to be supports. Once identified and trained, these supports can be nurtured. The ore people parents can train and nurture, the more help they will have when they need it.
The people with whom you connect, the deeper and sturdier your net. The effect is when stress hits, bits and pieces of that stress can be sent out into the net for others to manage thus making the load a little lighter on the parents. More people bring more skills and knowledge to the table allowing for the entire team to be more responsive to a wider variety of situations.
V. Final Thoughts
If you are the parent of a special needs child and you don’t have a social safety net, then I urge you to start doing the work to create one. Start fostering those crucial connections. This, more than anything will reduce your stress load and make life more manageable.
Be critical about the people with whom you surround yourself. Only keep those who will build you up, help you, nurture you. Distance yourself from users and those who bring you down.
To learn more about how to create a social safety net, check out The Special Needs Parenting Survival Guide. You can also contact me for a free consultation at 484-693-0582 or firstname.lastname@example.org
© Erik Young, M.Ed., LPC 2013