One of the most difficult parts of raising a child with autism is the fear of losing them. For my son, the combination of intelligence, impulsivity, and an inability to comprehend danger results in my family living in a constant state of hypervigilance and fear. When we go out, there is always the possibility he will try to run away. When we’re home, there is the fear that he will get out of the house. Our family has addressed this issue with an ability to think “outside the box” and one step ahead of our 14-year-old son, Ben.

1. Under lock and key
The most obvious way to keep a child safe at home are locked doors. We learned the hard way that deadbolt locks with a switch that can be turned by hand was only effective until he was 6 years old. One day he unlocked it and wandered out of the house while I was only one room away. Luckily, I caught him in time before he was halfway down the street. We switched to locks with keys and installed them on every door leading to the outside, my laundry room, my daughter’s bedroom, and our master bedroom. They are all master keyed so that our house key opens them all. In addition, we don’t keep our keys hanging next to the door. It’s inconvenient, but that’s the point.

2. Keeping watch: tag, you’re it
Another safety trick we use at home is something I learned from a life guard. While attending a beach outing for kids with special needs, they handed out lanyards with laminated cards that said “I’m Watching” on one side and had emergency first aid information on the other. This was to ensure that when there is a group of adults hanging out watching their kids play in the water, the parent wearing the lanyard is responsible for watching the child. This made me think about our own situation at home, where too often, my husband thought I was watching Ben while I assumed he was. This situation leads not only to missing kids but also to marital strife. So, we put the keys to the house on a lanyard, and the designated Ben-watcher wears it at all times. This way, when one of us needs to use the bathroom, we literally hand off the lanyard to the other person.

3. Tracking devices, helicopters and bloodhounds, oh my!
One of the most frustrating things about staying one step ahead is that we often don’t think about something until it presents itself as an obvious problem. Even after we changed the locks and donned our key lanyard, Ben’s safety was still not guaranteed. Last year, our greatest fear became a reality when Ben climbed our 6-foot privacy fence with the speed and dexterity of a tomcat. The person watching him was only a few yards away and watched him do it but could not reach him fast enough. He disappeared into the woods for 3 hours and was found with the aid of search helicopters and bloodhounds just before the sun set; he was cold, wet, and shivering.
After that incident, we obtained a tracking bracelet from our local county sheriff’s department that Ben wears on his ankle at all times. In the event that he ever goes missing, we can contact the police, who will find him using the radio signal from the device, rather than alerting the local news and calling the search cavalry. And from what they tell me, as long as the device is checked regularly and in working order, it doesn’t take 3 hours to find someone with this device.

4. Out and about
Parents of children with autism spectrum disorder know how difficult it can often be to take our children out into the world. A simple trip to the grocery store can become disastrous in no time flat. When our kids get overstimulated or can’t communicate, tantrums ensue and we often have to make a quick exit, while not making eye contact with fellow shoppers and store employees. Ben’s Houdini-like skills have also extended outside the home; school, stores, and Grandma’s house have all been settings for a “Ben Escape.” One thing we do now when going out is use a wheelchair with a seatbelt. Because of Ben’s sensory issues and difficulty transitioning, the wheelchair provides a secure, safe place for him to sit as well as the emotional stability of his seat remaining the same while his environment changes. Portable door alarms have been helpful on the rare occasion that we stay at a hotel. We’ve even been known to stack some of the hotel furniture in front of the door, from floor to ceiling, providing a barricade that would make a lot of noise if he tried to get past it. We’ve done the math, and we’re statistically more likely to lose our son than to have to evacuate in a hotel fire.

5. Vaseline
Yes, you read that right; Vaseline. Good old petroleum jelly became my best friend after Ben’s 3-hour tour of the woods. I needed a way to keep fence-hopping to a minimum, and apparently barbed wire is frowned upon by our home owners association. So, several jars and a very icky fence top later, the problem was solved. If having an autistic child in the drug-store line doesn’t solicit enough curious glances from fellow shoppers, nine extra-large jars of Vaseline is sure to.

For more information about wandering and a free box of safety materials, contact the National Autism Association at http://nationalautismassociation.org/big-red-safety-box/

Related articles:
The Difference 1 Makes: Reflections on the CDC Autism Rates
Autism on the Rise: Are We Prepared?

Without the tools to manage it, recurring and intense depression often breaks up relationships. The truth is, depression is hard to handle. One way to help make it through depressive episodes is by preparing a depression plan when the partner who experiences depression is not depressed. The aim of the plan should be to create a shared understanding about the changes in thoughts and behavior that depression causes, as well as a commitment to “stretch” to get through the difficult period of depression.

Separating the Person from the Depression
It takes a great deal of effort, on the part of both the depressed person and their partner, to separate the person from the depression. Yet doing this can be very important to maintaining the relationship. Try thinking of “Depression” as a third party in the relationship: an entity with its own unique thoughts and actions that it expresses through your loved one’s body. One way to do this is to establish the difference between how the depressed person acts when they are depressed and how they act when they aren’t.

For example, during an episode of depression, the depressed person may get much more sensitive to criticism. If both people know that, it can help them to remember that that behavior is the depression, not the person. The partner may want to be more careful not to be critical, or to not react to the depressed person’s overly sensitive reaction to criticism. “That is Depression speaking (yelling, crying, acting insecure, calling me names), not my loved one,” can be a useful mantra.

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This doesn’t mean the partner should take abuse. Partners still need to set limits—calmly, firmly and before accumulating resentment—about anything the depressed person does that doesn’t feel respectful. This may sound something like, “I know you’re in a lot of pain right now, but I won’t allow you to call me names under any circumstances. I’m going out now; let me know when you are confident you can treat me respectfully and I’ll come back.”

For the depressed person, it can also be helpful to remember that no matter what terrible things the depression is telling them (she doesn’t love me, she thinks I’m disgusting…), those thoughts are the depression interpreting what the partner says and does through a filter that turns everything to the worst possible scenario. If the depressed person can identify that this is the way Depression causes them to think before the depression happens, it can help them to remember that those feelings are likely distortions of reality, even though they may continue to seem real in the moment.

The depressed person can also prevent damage to the relationship by attempting to translate what they want to say (“You’re a skank”) into their own fears and sad thoughts (“I’m scared you’re going to leave me”) before saying it out loud.

Identifying Depressed Belief Patterns
Try making a list of messages that Depression gives, in general and/or for the specific person, in order to be able to look at it when depression hits. If every time the depressed person gets depressed, they become certain that their partner is having an affair, put that on the list. A list can be written from the point of view of the depressed person or the partner, or each can have their own. An example from the depressed person’s point of view could look like this:

“When depression hits, I see things differently and characteristically believe:

• My partner is having an affair
• I am ugly and undesirable
• I will never feel better
• I am a burden to everyone and would be better off dead
• I am inadequate in any number of ways
• I fail at everything I do
• My life is cursed
• Nobody loves me, or even likes me

“When I’m not depressed, all of this looks different. When I am depressed, I believe the depressed point of view is reality and the nondepressed point of view was distorted. This is not true and not helpful to my desire to feel good.”

Setting Boundaries for Caretaking
While it can be helpful for the depressed person and loved ones to define reality, loved ones can get burned out on reassuring the depressed person. They should do it only as much as it is possible to do so without resentment. They may need to pace themselves—can they do it once a day? Once a week? Give what support is possible without getting burned out or resentful, or starting to agree with the distortions (maybe I don’t love him, maybe he is disgusting). The rest of the time, the depressed person needs to do their own work: some alone, some in therapy, and some with other friends and people they feel comfortable talking to in order to soften the distortions.

Many years ago, a mentor of mine talked about how she coped with taking care of her partner who was dying of cancer. She wanted to be there, but not to feel resentful and burned out. She told her partner that she expected her to do everything she could possibly do on her own, and then my mentor would do the rest. So if her partner could get up and get a magazine for herself but didn’t feel like it, my mentor wouldn’t get it for her. This left her available for the kind of caretaking that her partner absolutely needed and allowed her to sustain her energy over a long period of time even as her partner’s needs increased. I thought this was a brilliant way of thinking about caretaking for loved ones. It’s so easy to want to rush in and do everything in the beginning and then burn out. Pacing oneself and seeing the other person take as much responsibility as they can helps the caretaker so much.

It is important for the depressed person to commit to “stretch” as far and do as much as they possibly can—as much as they would be able to do if they were alone. Then, if the partner is willing to act in a caretaking role, they can do what the depressed person absolutely can’t do. With depression, this can be tricky to identify. Only the depressed person knows where that line is, and it can be difficult for even them to establish. It also may change from day to day or minute to minute. A depressed person may have to spend a whole day psyching themselves up to get up and take a shower or to make a phone call—but then they may be able to do it, whereas earlier in the day they absolutely couldn’t.

It is also important for the depressed partner to “stretch” by giving expressions of love and gratitude to the caretaking partner. It may be very difficult for the depressed person to do this, but it is usually possible if the depressed person commits ahead of time and the caretaker reminds them that the relationship needs it.

Caretakers need to consciously keep their own life going as much as possible. If they can’t expect to be emotionally nourished by their partner when they’re depressed, they need to be sure to be “fed” by other family and friends, activities they enjoy, work, or whatever is available. They might consider going to Co-Dependents Anonymous for support with keeping boundaries and not giving too much. This can, ironically, free people up to be more available to the person who needs their care.

Maintaining Balance
Most depressive episodes do pass, and the person who experiences depression returns to their nondepressed personality and functioning. Both depressed people and loved ones have to try to remember this fact as they do everything possible to get through and resolve periods of depression. The most important thing to remember is that neither person should make big decisions about their relationship, or judgments about how things will be, until the episode is over.

Any caregiver is likely to be vulnerable to stress. However, parents who care for a child with a serious mental illness (SMI) are at increased risk for adverse physical symptoms resulting from stress. Those who care for an adult child with SMI are even more likely to experience the negative effects of stress because of the length of time that they have had to cope with the difficult task of caring for a loved one with mental health issues. Although there is a vast amount of evidence showing how caring for a child with SMI can negatively impact a parent’s psychological health, there is scant clinical evidence highlighting the deleterious physiological effects to the caregiver. Erin T. Barker of the Waisman Center at the University of Wisconsin-Madison addressed this specific dynamic in a recent study by examining the cortisol levels in individuals charged with the care of adult children with SMI.

For her study, Barker asked 61 parents of adults with depression, schizophrenia, or bipolar to complete a stress diary and submit daily saliva samples over a period of several days. The cortisol levels of the participants were compared to the levels of 321 parents of adult children who had no mental health concerns. Barker discovered that the cortisol awakening response (CAR) of the parents of adult children with SMI increased less significantly half an hour after they arose in the morning than the control group. This suggests that the caregivers had a higher stress level upon waking than did the control group. Additionally, Barker found that the cortisol levels of the caregivers declined less throughout the day than did the cortisol levels found in the parents of adult children who did not have SMI.

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“The fact that a similar pattern of hypoactivated daily cortisol in response to stress has been found across studies of parents of individuals with different diagnoses (i.e., schizophrenia, autism, developmental disabilities, and in the present analysis, SMI) and that used different measures of stress (i.e., behavioral problems of the adult child with the diagnosis, time spent with the adult child, and in the present analysis, daily stress not necessarily associated with the adult child) provides strong converging evidence for this effect,” Barker said. She added that these findings underscore the importance of addressing the mental health, physiological health, and coping needs of aging parents who care for adult children with serious mental health issues.

Reference:
Barker, E. T., Greenberg, J. S., Seltzer, M. M., Almeida, D. M. Daily Stress and Cortisol Patterns in Parents of Adult Children with a Serious Mental Illness. Health Psychology 31.1 (2012): 130-34. Print.