Caring for Children who have Holes in Them

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My teenager has Asperger’s. I’ve shared that before on this blog. But his disability isn’t visible to anyone from the outside. As a pediatric nurse, my patients can’t say the same thing. Their little bodies are riddled with holes: G-Tubes, Colostomies, Trachs, Central Lines, IVs, and more, cause their bodies to contain holes. I wanted to explore a mother’s perspective in caring for a child who is full of holes. What pain would it cause her? What strain would it lead to in her marriage? How would her friends and family react? Would they be helpful or hurtful?

I published this short story today. The price is set for free because my motivation in writing the story isn’t to earn money, but to hopefully be of some benefit to people who are going through similar challenges or for people who would like to know how to help moms who are. The story is called Full of Holes. Just click on the title to take you to the Smashwords site where it can be downloaded for several different devices. If you read it, please let me know what you think. Thanks!

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Building Strong Children

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Frederick Douglass once said, “It is easier to build strong children than to repair broken men.” As a parent, that is both empowering and terrifying. We live in a culture that seems to encourage “passing the buck”. In fact, I just watched the president of FIFA, the governing body over World Cup Soccer, stand before cameras back peddling to distance himself from any personal responsibility in the recent scandals plaguing his organization. It would be amazing to see a leader stand up and say, “As the president of this organization I accept full responsibility for what has happened, and will devote my efforts towards discovering where lapses in oversight occurred. I vow to fix what is wrong within my organization.” This man was about 80 years old, and yet he still seems incapable of accepting consequences.

Now, I don’t mean to single out one specific person, but this was the most recent incident and is fresh on my mind. This mindset is so rampant in society that it isn’t hard to find examples. As a mother of two young adults, I have made mistakes and I’ve done some things right. But I have learned some things along the way that I thought I would share. Why? Because I think Mr. Douglass is correct. I think that we need to put the work in on the front end, instead of frantically working to undo the damage on the back end. I also agree that it takes a village to raise kids. So, here are my thoughts:

1. Don’t protect them from their bad choices. Sometimes good kids make bad choices. And sometimes those bad choices come with consequences that they need to face. Did I naturally grasp this concept? Absolutely not! I owe this bit of wisdom to my daughter’s third grade teacher, Ms. Bishop. When Rachel forgot to bring home her homework, I took her back to school to get it–or her friend who lived a few houses up would get her mom to make a copy of it for Rachel to complete and take to school the next day. Why? Because if she came to school without her homework, she had to do it during recess. Her teacher finally told me, “Mrs. Miles, you are a wonderful mother and you have the best of intentions. But (and here comes the best part!) you need to cut the apron strings and let your child stand on her own two feet.” I’ll admit that it stung a bit to hear it, but she was so right! By swooping in and saving Rachel from consequences of forgetting, I was enabling her and she was learning NOTHING. So, I stood back and let her face her recess loss a couple of times. She not only survived (shocking, I know) but it only took once or twice for her to remember to bring her homework. Not only that, she had to come up with a system to organize herself and began diligently keeping a planner. To this day, she lives by her planner and she graduated earlier this month Summa Cum Laude from college. I think the lesson Ms. Bishop empowered me to teach her made all the difference in creating a strong academic student, who could organize her time and keep track of assignments. After all, at some point Mommy can’t rush you back to school!

2. Let them fail at something. Fail? I can hear a collective gasp of horror from many of my parent friends already. But your child will survive a failure and learn a great deal from it in the process. How do I know? Because I’ve failed at things and more than likely you have to. It is okay, and it generally makes us stronger in the long run. I’ve seen both of my kids work their butts off to audition for something, only to get passed over. Sometimes teachers, bosses, and coaches pick favorites, and it isn’t fair. Or maybe sometimes someone is just better than you at something. But the world isn’t fair, and sometimes learning that lesson is a good thing. If we can help frame “failures” as learning opportunities, we are doing a great service to our kids. Try to avoid being one of those parents who races to the school if your child doesn’t get the grade you think he or she earned. Instead, help your child see ways that they could have studied harder or more effectively. Did your child pass up a chance to do extra credit? Did he skip a class and miss a pop quiz or a study guide? Chalk it up to a learning experience and move on.

3. Help them develop problem solving skills. Every time your child is faced with a problem, it presents him or her with a chance to figure out a way to solve it. Every time we tell them what to do to fix it, we deprive them of the opportunity to develop strong problem solving skills. I’ve worked with adults who literally freeze in a panic when a problem suddenly appears unexpectedly. Obviously we all love it when things go like they should without any glitches–but let’s be real. How often does life go as planned? If we send our kids out into life without developing strategies to come up with a Plan B, without it totally undoing them, we are sending them out unprepared. Eventually they will learn, but the stakes are higher and the lessens tougher when they are young adults than if they’d learned these skills as children.

4. Be a good example. Okay, ouch! This is a tough one for me. But it is something I’ve tried to become more cognizant of as time goes on. Our kids don’t listen to our lectures nearly as much as they watch us react to situations. That is where the real learning is taking place. If we freak out when we get lost leaving a city, or when the car gets a flat tire, we are teaching them more than we might realize. And it’s probably not the lesson we want them to learn.

5. Encourage positive thinking. Negativity is one of the most sinister of all the traits out there, and it can sap the strength from our kids. Negative thinking leads to low self esteem, which in turn can lead to a myriad of self destructive behaviors. This is a personal struggle that I have with one of my two children, and the best solution I’ve been able to come up with is to talk him through experiences and attempt to re-frame them in a more positive way. My hope is that eventually he will learn this strategy, and put it into practice himself. In retrospect, he’d have likely not survived middle school without some help framing peer interactions and problems with a couple of teachers. If you have a child who leans towards the negative in recalling every experience, then it requires ongoing diligence and support. This is one instance where leading by example is crucial.

6. Give them responsibility. One of the best ways to become a strong person is to prove to yourself and others that you can be trusted with responsibilities. I think my parent’s generation did a better job overall of giving kids a list of chores and responsibilities around the house than mine does. There is such a valuable lesson to be learned from being responsible for a pet, or cleaning a room, mowing grass or doing the dishes. One day, every one of us has to learn how to do those things. Self discipline is crucial for success in life, and home is a relatively safe place to develop it. Parents are likely going to be a bit less harsh when a chore isn’t completed on time than a future boss.

Essentially, we want our kids to be prepared for the challenges of the world so that they can tackle problems, and bounce back from failures without completely falling apart. We want them to learn to cope with whatever life throws at them, even when it is something major.

In addition, we want them to be able to express their emotions, and become confident about who they are as people. I would love to hear your thoughts on this topic. Did you get advice from a teacher that proved to be helpful to you as a parent? Thanks in advance for your input.

 Photo credit: http://kidsfirstcommunity.com/

What I’ve learned in the Asperger’s Trenches

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This is a bit off topic for my blog, but as an author it is impossible to separate my own life experiences from future book projects. When I read books such as Jodi Picoult’s House Rules, I want to say, “You’ve gotten so much of it right, but it isn’t exactly right.” No one can possibly imagine what it is like for a mother to watch her child struggle through life feeling acutely “different” from everyone else. So perhaps one day I will write a novel featuring a character with Asperger’s Syndrome, or maybe it will always just hit too close to home for me to do it. But I thought I would blog about it and see where it goes.

A few years ago, I would never have attempted to give anyone else advice on how to raise a child with Asperger’s. Even now, I would never claim to have all the answers. More importantly, every child is unique; what worked well for my child might not for another child. However, I’ve been at this long enough now to have gleaned some knowledge that could help other parents out there.

I have an 18 year old son who was diagnosed with Asperger’s Syndrome at age 4. The early diagnosis in itself has been a great blessing to us because he began receiving services at a very young age. He overcomes challenges every day, and I feel so honored to be his mom. He is currently a freshman at Georgia Tech in Atlanta and is attempting to navigate life in a crowded dorm in the middle of a large city. Here are some key points that I have found helpful to me over the years:

1) Educate yourself. There is a wealth of information out there. The first book I purchased was Tony Attwood’s original book Asperger’s Syndrome. I literally read this book knowing nothing about this disorder and finished the book feeling empowered to dig in and walk this road with my child.

2) Find a middle ground. You need to be an advocate for your child and no one can do that better than you. However, I have found that many Asperger parents gravitate to the ‘extremes’. There are the militant ones who are going to fight with their child’s school over everything. Yes, I agree we have to fight the important battles (and believe me, I have!) but if a parent is fighting EVERY battle to the death, eventually the school begins to tune you out. The other extreme will pull their child out of school and other activities because these things are too stressful. I don’t think schools, sports and clubs are the enemy. School (if it is a good one) provides an Asperger’s child with structure, socialization, peer modeling, educators with experience in teaching special needs children, and exposure to other people than just his or her nuclear family. Parents need to work with the schools in a partnership. So advocate for your child, but try to form an ally of the schools which have invaluable resources that can help your child reach his or her potential.

3) Utilize your support network. If you don’t have one, work on developing one. Parents, siblings, friends, support groups, teachers, pediatricians, etc. The list is long. There are people out there who care about you and your child. If you have a spouse, work together to find solutions that you can live with. There was a lady at our church who took my son out for a treat when he earned a week’s worth of “green lights” in Kindergarten. It made a big difference in helping him learn the routines of the classroom when he had such a tangible reward.

4) Ask questions. Write down questions as you think of them before you go to the doctor, counselor, or school meeting. I do much better in those situations if I don’t have to try and remember all of the questions that I had at home. For school meetings, take your spouse or other support person with you. If you have a friend or family member who is an educator and understands the process, invite them.

5) Observe your child. My son doesn’t articulate what he needs and wants particulary well. But I can tell what calms him by watching his reactions to situations. For my son it is music, but you have to learn what works best for your own situation. As a small child, he liked to be covered up. We made a fort over his bed. Enclosed spaces can sometimes feel safer, but you only learn these things by observing your child.

6) Educate your family members. I finally sat down certain members of my family and laid it out. I basically explained why he acts the ways that he does and I let them know that I would not apologize for it again. Once people understand the reason for behaviors that are typically considered “rude”, they tend to accept them more readily. I wasn’t going to feel stressed out every time we visited family. It made a big difference for me. Life is just too short to go around feeling like you have to constantly apologize for your child. People who don’t get it need to just stop being around your child.

7) Talk to your child about Aspergers. The time to do this will vary for each individual family. During elementary school, I didn’t ever use the term Aspergers or Autism. He just knew he was pulled for different activities than other kids. By late elementary, I felt like he needed to understand what he was experiencing and had the discussion with him. Now, we talk about it and he explains to his peers what things are like for him.

8) Don’t worry about things out in the future. I had to learn to take each day at a time. I would get overwhelmed and feel total despair when I started thinking about high school, college, dating, etc. So, I made a conscious decision to just look at this month, this year. By the time high school came, it wasn’t nearly as scary as it had seemed when he was 6 years old.

9) Set the bar high. I have learned that my son can follow rules and patterns. He can understand goals. I believe that the world out there isn’t going to make too many allowances, so even though he had an IEP at school, he knew that we expected him to try his best. By the end of high school he didn’t use the majority of his accommodations anymore. He learned how to function without the extra help for the most part. He also knew that if he genuinely needed the help, he should ask for it.

10) Don’t forget the other children in the family. It is hard for children to see a sibling getting extra attention or different rules. Involve the other children in the discussions and make sure they understand the reasons.

11) Just love him. That really needs no further explanation.

If you are a parent living day to day supporting a child with Asperger’s, I would love to hear from you. If you know someone who is, please share this link with them. It helps to know that other people are in the trenches with you!

Update: My son is now 20 and a junior at GA Tech. The first year almost killed us both–but we made it through and it has gotten easier for him. Certainly not easy, but at least he’s made a few friends and is familiar with the campus. Some days it feels like we are taking on step forward and two back. But, we keep moving toward graduation day and hopes for the future.

***As of today, he is set to graduate from Georgia Tech on May 5, 2018. Once we cross this hurdle, the hunt for a full-time job will be our next one. Like I said above, I still take it one step at a time. Looking too far into the future feels overwhelming and just causes anxiety. Hopefully I can come back to update with good news about job prospects soon. Thanks for following!

Photo credit: http://www.bbc.co.uk/history/worldwars/wwone/launch_vt_frontline.shtml