Chronic Illness and Therapeutic Parenting

My name is Sarah Sanchez and I’m the Family Contact for Rio Rancho. Intentional parenting in general is a lot of work; parenting kids with attachment issues or troubled pasts requires you to function at a level most parents can’t comprehend. When my husband and I decided to add adoption into our house we were ready- physically, emotionally, and financially. We had three biological kids and knew we had more resources to share. During our two-year adoption period, I was involved in an auto accident that I was struggling to get over. We brought home two toddlers from Ethiopia and were thrilled to have them in our family. Two months after they came home, I was rear ended once again, but this time I wouldn’t recover. Here I was with five young kids, two with attachment issues, one with severe dyslexia, and one with gluten intolerance. And I was ill, not often, ALWAYS. Not only were we doing attachment therapy, speech, and OT but I had to be at the doctor or chiropractor a couple of times a week for my issues. It destroyed our plans to keep the kids in the house as much as possible because I had to take them to these appointments, which caused chaos when we returned home. This year I was fortunate enough to get a diagnosis of Lyme’s Disease and undergo treatment. It had been masked by the accidents, but it had been there for years, causing chronic pain, and fatigue- morning, noon and night.

I continue to meet parents who are in a similar situation as I am. They are struggling to meet the needs of their “hurt” kids, but with the added intensity of their own chronic illnesses. This lays the foundation for a potential disaster.  For myself and so many others with chronic illnesses, we have spent a fortune on medical care. Many families find themselves unable to hire help for cleaning, sitters, and tutors because so much of the available resources each month are going into dr appointments, therapy, etc.  The following points are the things that I’ve found essential to parent hurt kids while living in physical pain:

1.      Ask for help.   I struggled to ask for help early on because I felt like this was something “we” got ourselves into, and “we” needed to handle it. I eventually realized that I needed help from healthy people in our lives to get through this time. Another strategy was doing bedtime dates- put kids down early, and try to stay up and enjoy the quiet. Again, for sick people this is tough.

2. Self Care- Do it.  Taking care of yourself and your relationships is difficult when you have lots of kids, because their needs are endless. I’m  now better at giving myself permission to shut the door, go to bed early, or rest. My limitations as a sick-parent are real and hard to swallow some days. But here is the thing- even healthy parents have limitations, ours are just greater. Grieve the loss and then form a plan- what is realistic for you to accomplish today, this week, this month, etc. Consider having an understanding friend help you sort out a plan. Consider joining the child-care swap available through FIESTA. That way if you are having a bad week, you have another pool of folks to help.

3. Grieving.  Parents living with chronic issues face a lot of losses. It is hard to acknowledge the “huge loss” of “this is not the life I planned for my kids”. Because you face losses everyday with your kids- I can’t take you to the park today, I don’t have the strength, or you have to go with me to this appointment because I can’t afford a sitter, I can’t do laundry and dishes today. I felt like I was failing on so many levels. But I needed to form new expectations as a sick/disabled Mom, and ditch the “high” expectations I had for myself. That process is grievous, I felt like I was always “compromising” which also felt like a loss. I learned that there are therapists who specialize in working with families who live with chronic illness.

4. The NEW Normal??? Whatever that means. For years I had Doctors tell me to focus on a “new normal.” For us, this meant our kids couldn’t (currently) be involved in extra curricular activities. This breaks my Mama heart regularly, but it is necessary. We have learned to play more games at home, host more movie nights and do home-based activities. They do have a mom who, even if I’m on the couch, can provide emotional love and support. It also means my home and my car almost never look the way I want,  because I can’t keep up. I can be upset about it and disrupt the emotional atmosphere of the house (we all know how well our hurt kids respond to that), or use the opportunity to teach my kids many, many lessons. For example:

                  *We care about people more than possessions. If someone among us is weak or sick, we must care for them-it is easy to do this FOR our kids but much harder to let it be us that needs the care.

                  *We try to focus on the many things we have, and not dwell on the things we want.

                  *Growing up in a household with special needs teaches kids to be empathetic and caring. It has taught all of us to be generous with our time and resources for people in need, and they would all agreeJ

In closing, if you too are living with a chronic illness and trying to be an intentional parent in spite of things, you have my sympathies. It is beyond difficult and often lonely. Many people will not understand, and you have to be ok with it. Let me leave you with a quote that I think of almost daily.

ATTITUDE   by Charles Swindoll

“The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company... a church... a home.

The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past... we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude... I am convinced that life is 10% what happens to me and 90% how I react to it.”

Sarah Sanchez

Avoiding the Holiday Blues

December can be a stressful time of year, not only for our kids, but also for us. Planning too many things to do can create anxiety on our families with too little sleep and loss of routine.  Envisioning your kids delight while opening a hundred presents with shiny eyes and a grateful heart can cause us to resent them when they can't measure up. Not taking care of ourselves can make the whole month take on an ugly tarnish. Here's some tips for making it easier:

1. Scale back- only do those things that will bring your whole family joy. Don't get carried away with the feeling of obligation to friends and extended family. If you can't attend every event or party, send apologies and carry on without guilt- your child may not be able to hande every get-together.

2. Schedule in plenty of down-time and quiet time. Make crafts together if your child enjoys it, read holiday books, eat by candlelight. Take advantage of the quietness and sensory parts of the holidays with nice smells and tastes, playing in the snow, playing soft music. Avoid busyness.

3. Think about gifts as things that will benefit your child instead of only things on their lists. Remember that whatever you buy may get broken, so expect it. Don't buy expensive things that your child is not ready to take care of. Don't over-do it with numbers of presents either. Think of things that will help your child connect with you- for example, you could go ahead and buy that video game system, but commit to playing together and buy a timer to go with it :) Lay down ground rules from the beginning to avoid power struggles. Think of gifts that you can build together, read together, listen to together.

4. You may dream of taking your child to a special concert or program, you may have wonderful warm, fuzzy expectations of going to grandma's and letting the cousins all play quietly in the other room while the adults visit. But. Your child may not be there yet. And if your plans are ruined by a meltdown or power struggle, your disappointment may cause a problem in your relationship. Think about your expectations and dreams and modify them. It's not your child's fault that you have unrealistic expectations.

5. Pay attention. It's easy to get distracted during this season and not notice signs that your child is starting to get stressed or anxious. Make sure that you're mindful of the clues that something may not be exactly right, and take a few minutes to pull your child aside to make sure everything is fine with them. If it helps, make up a secret sign or code so that your child knows he/she can have your attention when they need it. In our family, if one of our kids says, "I need to talk to you in your office," it's code for, "Something's up and I need you alone." I always respond when they say those words and we find a quiet place to talk.

6. Schedule time to re-charge. Write it on your calendar- "sit on front of the fire with a glass of wine," "get a massage today," "get respite to have coffee with a friend." Not letting yourself get burned out can make all the difference between enjoying the holidays or seeing them as a burden.

Scaling back, re-thinking your expectations and focusing on your child's emotional temperature are three ways to keep the "Happy" in "Holidays." I hope that your family has a fun one this year with plenty of time to play and connect!

Join the Book Club!!

We have just started the discussion on "The Whole Brain Child," by Daniel Siegel...

"I haven't read this book before now. So I just finished chapter one and I'm reflecting on my evening. I'm paddling down a lazy river on a nice calm evening when I realize that B, who was reminded to finish the dishes (maybe 40 times?) is talking on the phone, dishes undone. The other sweet littles are munching on cookies and generally being silly. Fast forward down the river. Bedtime and we notice that the rooms are a total (insert cliche) Pigpen and the closet floors are nowhere to be seen under layers of clothes. I would like to know how things can get so bad when they were just cleaned last night under the same circumstances. (Did I mention that the dishes still aren't done? And we used paper plates!) My lazy river has turned into raging rapids and I am slamming against the shores of chaos and rigidity as I become dis-integrated. My heart rate goes up and my voice gets mean and (sorry Dr Purvis) my eyes are not soft. There is a little voice in my head that tells me that it is my fault that I was preoccupied when there was cookie munching and phone-call-talking and that I need to be more aware of the state of the responsibilites before it gets this late. Again. So, I look forward to learning how this book can help me gain some mental health so that I can teach my kids to integrate their own brains.  So what do you think? Is there a river? Are the banks called Chaos and Rigidity? Does this ring true with you? On to chapter two...."

Interested? Does this book sound like something that would give you more parenting tools by understanding the right-brain, left-brain, top-brain, bottom-brain integration? I know that I, for one, can always use new ways to see my child- new ways to improve myself and learn, or even review, information that can bring hope and healing. Pick up the book, order it on Amazon, or grab a copy from the Fiesta library and log on to the Facebook group page,  NM Fiesta Book Club to discuss it with the rest of us.

Perceptions

The other day a family friend dropped by. He’s one of those people who has strong political opinions and shares them without filter. I would guess that we all have friends or family members like that. He’s a kind, Latino man in his mid-forties, who has never been married or had children. He walked into the kitchen where my husband and I were assembling plates of granola pancakes and melon for dinner (because, once again, neither of us had given dinner much thought until it was time to eat). Four or five kids were already at the table, anticipating and maybe listening, but probably strategizing the many ways that they could arrange to include sugar into the meal. So. Our friend says in his loud voice, “I heard on the radio that there were some black extremists who decided to blah, blah, and caused all kinds of trouble by blah blah, Trayvon Martain, blah blah…” when I held up my hand and stopped him by reminding him that there were kids listening and he needed to be careful what he said in our house. He looked in the direction of the table and seemed to be surprised to see kids of many shades looking at him. He sheepishly changed the topic of conversation and behaved himself the rest of the night.

Later, I was replaying the event in my mind, deciding if I handled it right. Should I have said more, said it differently, let it slide? Would talking with the kids about it now make it a bigger deal since they may not have even heard what he said? Is it a teaching opportunity to explain how some people, even friends, can have opinions that we find offensive or should I let it go? I wondered why, so often, people forget that the kids are different races, when it dawned on me- maybe they think of my kids as white. Maybe they noticed and thought about race when some of our kids moved into our family, but maybe now, after time, they simply think of them as Gloetzners- white people. Would he have been so free with his words if we were all black? (And really, please don’t categorize people in subtle negative ways to anyone in my family- no matter what color they are.)

I was talking to another adoptive mom a few months ago when this subject came up. She has a black teen son and lives in a tiny NM town. They don’t talk about race at all and every one of his friends is white, I asked her if she thought he considered himself black and if he thought about it much. What would happen when he left the small town and schoolmates for college or work where no one would see him as part of a white family and treat him like the black man that he is becoming? She hadn’t really ever thought about it. The entire community sees him as white. Ignoring race is not doing this teen any favors. Because it isn’t freely discussed in his house, doesn’t mean it isn’t on his mind. A lot. Seeing the kids at my table as part of a white family and not as part of the black community is not doing them any favors. Assuming that being in a white family makes you white is insulting and harmful to kids. I think it’s time to have a heart-to-heart talk with my friend.

Question

I recently attended a training at The Attachment Healing Center with director, Michelle Coleman. (I highly recommend it.) In speaking about neurology and why we don't want to parent out of our reptilian brain (think about how reptiles parent), she suggested that there is another coping mechanism to add to "fight, flight or freeze." A fourth survival response can also be, "mend and be-friend." It reminded me of a story of a lady who was kidnapped and forced into a car with a creepy bad guy. Over the course of a couple of hours, he drove and she talked. In be-friending him, even mothering him to some extent, she won her freedom, unharmed. Do you think this is a valid idea and, if so, how can we use it as parents?

A Little Word on Subsidies

Aodopting some of my kids felt like winning a new car. “You mean I get to keep it? Forever? It’s mine? No payments?” But a couple of the adoption packages have come with a financial piece. It’s like winning the car and then finding out that you get free gas, as well. Talking about money makes me uncomfortable. The fact that when I adopted some of my kids, they came with a stipend, makes me uncomfortable. But here’s the truth for many of us- “I didn’t adopt them for the money, but I couldn’t have managed without it.” I wouldn’t have been able to stay home as much; I have no idea how I would have attended all of the doctor/therapy/school/clinic appointments; going on vacation, even a low-budget one would have been impossible. I would have adopted them anyway- we would have managed somehow. But I’m thankful that the money is there to give them more of my time and energy. After all, this isn’t a new car that I’ve won. This one has gone a long time without an oil-change and it’s been in a crash or two.

So here I am. I’m grateful for the stipend, but I really don’t think about it much. I get a statement in the mail and file it with the others in case I need to take out a loan. Otherwise, it’s just in the budget and it will be there forever. Right? Not so much. These children of mine are growing up at their own pace. While my bio’s hit 18 ready to fly, these youngsters will take their time. I know this. I’m fine with it. I understand that they will need my continued support in many ways when they hit adulthood. As their needs may increase (college, cars, apartments, mistakes) the subsidy will not and I will still be the parent. Someone in Santa Fe told me once that they were amazed at the number of people who call and say, “My kid turns 18 next month! What am I going to do? How am I going to do this without the money? My kid isn’t even out of high school yet!” It’s like they look at the calendar one day and realize that they may be in trouble. The person on the other end of the phone isn’t going to listen to the story and say, “Oh, I see. Let’s just keep your subsidy coming for another year or two. You let us know when you don’t need it anymore.” As parents, we need to realize that and plan ahead for it. It’s our kids’ money, after all, and we need to make sure we budget it wisely. Because this isn’t a car at all, is it?

The “Problem” with Teen Attitudes

 I’ve been reading the book, Nurture Shock, by Bronson and Merryman, and I was fascinated by a chapter entitled, “The Science of Teen Rebellion.” The book was written to shed some light on commonly held beliefs about parenting that have been proven completely untrue. (Did you know that telling a child that he/she is smart usually leads to lower cognitive test scores?) A few things got my attention in regard to teen behavior. Interestingly, the symptoms that we associate with difficult teen years (rebellion, moodiness, and sulkiness) are exactly parallel to the symptoms of sleep deprivation. While we are stepping back in requiring early bedtimes when our kids hit twelve to thirteen, their bodies need even more sleep than they did when they were younger. The simple solutions of protein-rich snacks and plenty of sleep still hold true as our children grow. For our kids who have more-than-average vulnerabilities, the meeting of these physical needs can make a huge difference in their ability to cope with other stressors in their lives.

Another interesting section of the book dealt with teen lying. Even teens who have secure attachments lie regularly to their parents. Two of the reasons given, (through hours of interviews with teens themselves) are to keep their privacy and independence and to keep from disappointing their parents. For example, if you ask your daughter if she “likes” a particular boy (especially one she knows you wouldn’t approve of) her false negative answer will not only give her more freedom and less lecturing, but it will also protect you from worry and disappointment. As an adoptive parent, it helps me have a clearer perspective about my kids to know what “normal” looks like. Behaviors that I find objectionable are not always caused by trauma. Even though a child with a difficult past or insecure attachment can magnify these behaviors, they are not only “adoption issues.”

But the section of the book that made me say, “Ah-ha!” was on teen arguing. Parents see it as a problem, a challenge to authority, and proof that their child is trying to manipulate and control. But teens don’t see it that way. (Teens who have overly permissive parents don’t bother to argue. Teens who have overly controlling parents don’t dare- but they are depressed.)  From a teen’s perspective, arguing is more like negotiation. Think of curfew. If I tell my son to be in by 11, but I never follow through and don’t really care when he comes home, he’ll just agree and then do what he wants. But if he is going to a movie that gets out late and wants to extend his regular curfew, it is actually a respectful thing to negotiate. Arguing about it proves that he is actually planning on obeying the rule and that he respects your fairness in allowing flexibility. Arguing (negotiating) can be a good skill and there can be mutual respect expected in stating a case and coming to a compromise. The thing that can “drive us nuts” can help him when he is making a purchase, asking for a raise or living with a life partner. When you think about it, there are plenty of opportunities to allow a child this freedom when she is younger, as well. (Score another point for Dr. Purvis.)

Got Ice Cream?

As my motley, sweaty family packed up our camper this morning to head back toward home, an older, overall-clad man approached me with a twinkle in his eye and said, “How many kids you got there?”

“Oh, we lost track a long time ago.” I laughed.

“Can I buy you all some ice cream?” he said and handed me $40 before I could answer. Walking away, he said quietly, “I wish I’d had more kids…”

            So often we trade stories about the rude and crazy things that people say to our families, especially those who are obviously not biologically related. But the opposite is also true. People can also be incredibly kind and generous.

            Yesterday, to break up the long car ride, we stopped at a tourist trap cave. It had been raining and hot for days. Walking up the ramp toward the glittering lights and promises of  “World’s Best Attraction” (or something like that) a 40ish man with an employee badge and a twinkle in his eye said, “Are all of these kids yours?”

             “Yes.” I said.

            “What a bunch of little blessings,” he said. “How many kids do you have?”

            “Fifteen,” I said.  “But they’re not all with us. Some of them are grown.” We continued to chat as we paid a small fortune to see the amazing sights and then we continued on our tour. It was amazing. Ok. It was a reprieve from the heat and driving.

            Coming out of the main attraction into the gift/fudge/snack/can-I-please-buy-useless-stuff-mom area, the man asked if we liked the cave. “Can I buy you some ice cream?”  he asked, and handed us a business card with a note scribbled on it. “Just give this to the ladies at the counter,” he said, “And they’ll give you what you want.” Thanks, Mister!!!

            What a great opportunity to show our kids that the world can be a friendly place! What a conversation starter to wonder how we can follow the example of kind strangers.

            Ok. So maybe my kids look a little on the under-fed side, because a couple of weeks ago, my husband had the crew at a pizza place after going to the lake and the waitress walked up with a twinkle in her eye. “A couple just left and paid for all of you to have milk shakes,” she said. “Let me know when you’re ready to order.”

            

International Adoption- Back to the Motherland

The decision to take our live-in granddaughter to India, the country of her origin, was made without an incredible amount of research or thought. My husband, Ron, and I often make decisions this way (although I don’t recommend it.) The planets just seemed to align, starting with an innocent comment by an adoption professional friend that “they say” that the age of ten is the best time to make the trip. After thinking it through, it rang true with us. Pre-teens are still looking at life through their parents eyes, they feel safe as long as their parents are close by, and they haven’t really processed deep thoughts yet on heavy issues such as poverty or crazy traffic. (On top of that, they are not yet worried about their makeup and clothes being the top priority.) We decided that the best way to go back, considering our circumstances, was for me to take Somi with a group.  After asking around, we found that a program called “India Ties” had a trip scheduled in two months, so we signed on. Easy, peasy, right? Let me just say that getting Somi’s passport and visa should be made into a scary movie…ending in the fact that both came by FedEx to our home at exactly the time that our flight was due to take off, two days after Christmas. I’m sure you can imagine the stress…and the relief when we were able to arrange our flights to get there in time to join the group. We were literally waiting in the driveway for the delivery truck to bring the documents.

The Ties program has offered adoption travel plans for eighteen years to sixteen different countries, so they have this stuff down. We saw the typical tourist highlights like the Taj Mahal, rickshaw rides, and elephants, along with out-of-the-way stops to see organizations that are helping India solve it’s long-standing problems of poverty, homelessness and orphan care. At one street-kid shelter about fifty homeless kids sat in rows in a small room when we entered. We were able to interact with them, but it was awkward. Until. One of them turned on the music of “Gangnum Style” and everybody- American teens and parents and Indian street gang kids all started to dance. Crazy-fun! One afternoon we all went to have saris made and then wore them out on New Year’s Eve. One evening we were matched with a middle class family and had dinner with them. Our family had a daughter Somi’s age. She was happy to practice her English by telling us all about her life, school, and future plans, including an arranged marriage. She and Somi exchanged email addresses. We saw monkeys and elephants on the streets, camels being walked along, myriads of women dressed in bright saris, people wrapped in thin blankets sleeping on the streets in the cold, and candlelight vigils protesting the treatment of women. We had amazing Indian food.

During the first four days and the last four days we were with the group and during the middle we were on our own. There were ten families of various sizes and stages, two Ties staff members and an Indian guide. One staff member was a thirty-ish Indian adoptee who has his social work degree and moved to India to start a foster care organization. He led the kids and young adults in groups designed to help them process what they were experiencing and spent downtime with them playing soccer and eating at a New Delhi McDonalds. The parents had a group as well. During the middle days of the trip, Somi and I traveled to the city of her birth in the south. Arrangements were made for us to visit the place that she spent the first four years of her life and we met with the doctor who cared for her during that time. Nothing earth-shattering happened there, but I have confidence that the experience will have a positive effect on Somi both in the present and in the future- it was well worth the investment, the stress and the time away. For now, I am happy to report that she absolutely fell in love with India and can’t wait to go back.