• How do I handle fatigue and depression?
• My son has alot of behavioral problems. I just don't like him very much right now and I feel so guilty! What can I do?

Many parents with ill or special needs children suffer from fatigue and/or chronic depression.  What are your thoughts on this?   - No name provided   

Dr. Cline’s Answer: 
When dealing day in and day out with all the fires that life brings, it often seems that we simply can't get away from the smoke and the heat and take time out for ourselves. To tell the truth, many of us just don't take time to renew ourselves. For instance, yesterday I spent the day working when I had planned to be out bass fishing.  Things come up!  So, although the problem may be universal, it is particularly difficult for parents of children whose lives are filled with medical appointments, treatments and special dietary concerns in addition to all the normal parenting requirements. It is very important for all parents not to ignore this problem and critically important when parenting special needs children. We discuss this issue at length on pages 7-11 of the book Parenting Children with Health Issues but here are a few ideas: 

1) Make Taking Personal Time a Priority!  Plan ahead on your calendar. I am somewhat of a workaholic.  Therefore, my wife marks out vacation times one year in advance.  When our own children were small, she marked out special weekends for time with the family and those weekends were sacrosanct!  There was always a six tremble on the Marriage Richter Scale if I filled in any of those weekend days with a patient or presentation. 

2) Make it a priority to have reliable resources.  The problem is, it takes time to build relationships.  And time is our most precious commodity.  So, put some precious energy into building a support group- a reliable support group- that can be called upon when babysitting or weekend care is needed.  Sometimes the youth pastor knows of very reliable older teens.  Big Brothers or Big Sisters organizations may be helpful.  There may also be groups of retired people in your area. 

3) Use time wisely. Every day we have a few minutes of disposable time.  We can use that time to make the telephone calls that we feel we have to make; and to update the grocery lists, pick up the clutter around the house, or do the professional take-home work that needs to be done, or take those few precious moments to sit down, breathe deep, relax and give thanks for the microseconds of tranquility we do experience in our lives. When driving, don't even dream of using that cell phone!  Turn off the radio!  Concentrate on driving but give thanks and praise for the opportunity to relax and tune out the rest of the world if even for a brief moment. 

4) Get help. Depression is a real problem for some folks.  Depression can run in families.  And, of course, it can result from chronic overload.  Take some time and share your concerns with a trusted friend or counselor.  If real depression is present, the newer antidepressants are very effective.  They are not addicting.  Many times in my professional life I found people waited a needlessly long time before giving antidepressants a responsible trial.  

I hope these thoughts are helpful to you. 
 

Lisa’s Thoughts: 

This issue is one of our family’s biggest problems- too much to do and never enough time. This results in fatigue, burnout and feeling overwhelmed. Here are several ideas I have found helpful over the years. Don't add to your stress by trying them all out at once! Set a goal to try one at a time and see if it makes a difference. 

• Escape the “tyranny of the urgent” and focus instead on what’s important. Sometimes I get so focused on addressing what feels urgent (like housework, requests from others, etc) that I don’t spend enough time on the most important (like time for myself and family).  

• A “to do” list helps me prioritize. Having things written down helps me feel more in control of my schedule and checking things off gives me a sense of accomplishment.  Being organized is the key. Visit FlyLady.com for great advice about how to be more efficient with managing/ organizing/ cleaning our homes. This is where the “tyranny of the urgent” takes over for me- keeping the house running. And, sometimes I need to let go of how it “should” look.  

• As the kids get older, they should be helping more with the household chores. Using good parenting skills helps ensure that chores really are a source of help rather than frustration! Love and Logic has a wonderful CD called, “Didn’t I Tell You to Take Out the Trash? Techniques for Getting Kids to Do Chores Without Hassles” by Jim Fay and Foster.  

• Turn off the news! When I am feeling overwhelmed, I turn off the news for a few days.  We are barraged with information and much of it is negative- terrorists, kidnappings, wars, political squabbling, hurricane forecasts, etc.  This adds to my stress level- I can’t help but worry about it all! If you feel like you must stay in touch, consider reading the newspaper rather than watching TV. We have more control over what information we “let in” and it is less jarring to our senses. Don’t keep the television on in your homes as background noise. It adds to the level of chaos. Only turn it on when you have something specific to sit down and watch. This will be healthy for your kids, too.  

• My friends are good about helping me to take a break and they have my permission to remind me to slow down. They can see the signs of burnout in me sometimes before I can.  

• Join a group that is both structured and relationship-oriented for yourself. I attend a weekly Ladies Bible study and am blessed by the friendship, teachings, and support. I also make it a priority to attend the annual Women’s Retreat. It is always a time of refreshing and renewal. Others join support groups, sports teams or help at non-profit agencies. This is a good way to develop that relationship network Foster mentioned and get some self-renewal time.  

• I was given wonderful advice by a woman who lost both of her children to CF. She told me to find something I love to do and stick with it. “It will save your sanity and marriage as you go through the tough times” she told me. Her “thing” was tennis. Mine is teaching parenting classes and creating this program.  

• Recognize that I can’t “do it all.” It’s okay to say “no” and it’s something we, moms especially, need to do. It’s okay not to be the class mom, Cub Scout leader, soccer coordinator, on the PTA, and church small group leader all at one time! Of course all of these worthy groups want us to be involved because they need the help. But, we need to set good boundaries around our time and not be afraid to say, “Thank you for asking but I can’t help with that right now.” There are many great books out there on setting boundaries and my favorite is “Boundaries” by Cloud/Townsend.  

• Figure out the activities that give you the most joy then spend your time there. I love teaching parenting classes so I do that at church rather than help with Sunday school. I also love photography so I combine that passion with family adventures. And, I bring my laptop with me to write during the kids’ soccer practices. 

• Learn good parenting/ relationship skills: When we are getting along with our kids (and spouses) and can handle the challenges that come up “without breaking a sweat” this takes a lot of stress out of our lives. I can’t tell you how much the Love and Logic tools help our family in this area.  

• Making personal growth a priority: When we have a sense of personal purpose and value, ie: “Who am I and what am I here for?” then we have a compass that helps keep us pointed in the right direction. The book “A Purpose-Driven Life” by Rick Warren was instrumental in starting me on the path to finding my answers to these important questions. Parenting Children with Health Issues is ultimately a product of that self-discovery process. 

• Regarding depression: I struggle with short bouts of deep sadness. Recognize that this is normal for us special needs parents. I’ve heard it called “chronic grief.” I also notice that this has something to do with my monthly cycles. I deal with it best by taking extra good care of myself during these times which sometimes includes a bubble bath and a good cry. Some of my best writing has come from these times. Knowing that this is normal and that the clouds will soon pass and the sun will shine again- even when I don’t feel like it at the time- helps me through.  Looking back, I realize that I suffered from post-partum depression for about a year after Kasey was born. I really should have been on medication but didn’t recognize it for what it was at the time.  Thankfully, it went away on its own after I stopped nursing her (I’m guessing it might have been hormonal).  But, learn from my mistake and don’t do this to yourself.  Get help if your deep sadness lingers more than a month or so.  
  
  
•  And, last but not least, let’s go easy on ourselves and laugh a lot- even if at ourselves. It’s hard not to take life so seriously when life is so serious for most of us. But, in the end, we all die and pay taxes. It’s the journey that matters and we might as well enjoy it along the way!

Question:

My 5 year old has severe ADHD, ODD and possible Tourettes. He's super needy and once I give him what he wants, he's NEVER happy with it. Nothing I ever do is right, no matter how hard I try. He never shuts his mouth, from the time he gets up in the morning and even in his sleep, he's constantly talking or making some obnoxious noise or insanely loud sounds. Thomas is disrespectful to an extreme, does not listen to anything I say no matter the consequence for his actions. He yells and screams at me, acts like he's helpless ALL THE TIME, not even able to dress himself. He CAN do it, he just refuses to. He wants me to do it for him and when I don't, it can literally take HOURS before he will finally do it. 

All of this I just get SO tired of. I feel like a HORRIBLE mother because most of the time, I don't want anything to do with him. I don't want to hear his voice, I have to MAKE myself show him affection because at times I actually cringe when he touches me. All I want to do is love Thomas, but I honestly don't know how. I don't know how NOT to feel this aggravation towards him. On days when I wake up determined to have a good day with him, it goes south so fast. He fights me on everything. How am I supposed to just be happy and love him and smile and play and have fun with him when he fights me at every turn? I worry that he must feel alone, because I have such a hard time showing him love. I worry that there's something wrong with me, I worry that I don't love him. How do I fix this?? How do I change the way I feel? I hate this, I hate that I feel this way. What's wrong with me?

Lisa's Answer:

There are a lot of things going on here! I'll try to help you sort them out a bit one by one as best I can with limited information and limited space to write in. Your issues are complex and I don't want my answer to appear too simplistic but, as a parent coach, I can give you some tips that will get you pointed in a better direction.  And, I hope your son is getting good professional medical and mental health care. If the ADHD is well-controlled, that might help with the ODD issues. But your docs need to help you figure that part out. 

First, let me say that you need to give yourself a break. You are a loving, caring mom who has been dealt a very tough hand.  Pretty much anyone in your shoes, except Jesus or Mother Teresa, would be feeling the same way. ;-) 

Any one of those medical issues is hard to deal with and when you have all three, it's exponentially difficult. So, let's start right off by saying that the feelings you are having are normal, you are not a "horrible mom" and you need to let go of the guilt and start practicing self-compassion. There's nothing wrong with you and you do love him. Otherwise you wouldn't feel so tormented, you just wouldn't care; the opposite of love is not hate, it's indifference. 

That being said, you understandably don't like his behavior. Every parent can relate to this feeling at some time with their child. Kids can be frustrating!  What is harder for you is that there is no break in the challenging behaviors your child is showing. It is harder for you to see the positives of his personality because the negatives are so predominant right now. And, feeling so helpless, frustrated, and out-of-control can add to how you feel about him (and yourself).    

So to start with, give yourself a break and ditch the guilt. Guilt causes big problems in relationships with our children including enabling them, overprotecting them, rescuing them, and not holding them accountable for their behavior. Here's a link that will help you learn more about guilt and overcoming it: Article on "Handling Guilt"

That being said, there are some things that you can do to start helping your son learn to behave more acceptably. You said he spends time with MeMe. Does he behave this way with her or with others? Does he behave this way at school? If the answer is NO, then he has learned that he can get away with this behavior with you for whatever reason. This is common when kids have special needs. 

After ditching the guilt, you need to decide whether or not you want to make the changes it will take to start down a better road. You are caught in a negative pattern right now and it will take courage, the willingness to change, and education to change it. 

I have limited information here about how you respond to your son when he misbehaves but I suspect you get frustrated with him, argue with him and say things like, "Yes, you can get dressed yourself!" and use consequences improperly.  Now don't feel guilty about this, too! :-) Many parents do use ineffective parenting responses especially when they are frustrated. 

So, here is the list of ineffective parenting responses (especially with a child that has the  issues yours does): anger & frustration, punishment (including time outs and taking things away), yelling, nagging, lecturing, spanking, bribing, giving in, and ignoring/ giving up. 

Here is what is effective: using choices and questions instead of demands and commands, using mutual problem solving, using enforceable statements (saying what I will do instead of telling my child what he has to do), giving conditional yeses instead of saying no (especially with ODD), responding to arguing with empathy or using one-liners, and using empathy before consequences (both natural and imposed) instead of anger and punishment. 

Here is a link which will help you learn all about these concepts. There is a free one hour audio and free video clips to watch which will help you get started: www.ParentingChildrenWithHealthIssues.com

Another thing I would recommend for you to try is this: For three days, be very focused on what he does right or well MORE THAN the things he does wrong. They might be very small. Say things like, "Thomas, I noticed that you handed your brother a toy. That was very kind. Thank you." or "Thank you for picking up your dirty clothes." Or "I noticed that you were drawing a picture. Will you tell me about it?"  Or "You seem to really like swimming."

Give him eye contact, gentle touch (a hand on his arm or touch his hand) and undivided attention when you give him these "encouragements." The key is to give him MORE attention when he does things "right" and less attention when he does things wrong. Anger and frustration count as attention. 

Some kids really get off on making adults mad. ODD falls into this category. The more anger and frustration you show, the more you are rewarding his behavior. Of course you will FEEL anger, but the key is not to show it. So when you feel mad, it's okay to say: "Thomas, I am really upset right now about the way you are treating me. I'm going to take a minute to cool down and then we'll discuss it." Then follow up with a problem solving discussion or, if needed, empathy before consequences.  

By handling your own anger well, Thomas will begin to learn from your example how to handle HIS anger better. He needs to learn the skills for his own anger/frustration management. And he needs you to teach him by both your own example and by giving him the tools to handle his anger. Teach him how to pound a pillow in his own bedroom when he is feeling mad, or pound some modeling clay, or run up and down the stairs ten times, or take ten deep breaths. 

He will need to learn social skills- there are some really good classes available these days to help kids like him (taught by professionals) to learn how to make (and keep) friends. Here is a link for an example- not sure where you live: www.befriended.org

These are critical skills for him to learn right now at age 5 or he will become isolated socially and make things worse. Kids act out to get their needs met for belonging and attention and unfortunately, they do it in misguided ways. Common with ADHD... 

As a mom of two children with special medical needs, I can relate to what you are going through. I, too, have had to learn new parenting skills in order to deal with similar issues- resistance, defiance, "I Can't" versus "I Won't", tantrums, guilt, etc. My message to you is that "If I can do it, you can do it, too." 

Hang in there, there is hope.
Hugs,
Lisa G.
mom of two kids with cystic fibrosis, author and parenting educator/coach
www.ParentingChildrenWithHealthIssues.com