Tag: family

The Litmus Test

On February 1, 2016

0920_WEB_e_Soddy_Daisy_boy_t800_hee6d36c352399cd07bf73e0b2e437abd06fcf931

I think anyone who has a disabled sibling understands the concept of the litmus test. It generally begins in elementary school when our classmates discover that our sibling is “different” than most kids. Which classmates pass the litmus test and become friends that we are willing to risk inviting over? The ones who don’t make fun of our sibling. We instinctively select friends who show acceptance to our sibling.

This continues well into adolescence when we are teenagers and enter the dating scene. We see someone we think is cute, everything seems to be going along great, and then BOOM…it happens. He or she makes a joke or a rude comment about our sibling, or even someone with similar issues. All the wind instantly leaves our sails as we realize that we can never bring this person around our family. Honestly, we are better off without them, but sometimes it is hard to realize that as a hormone riddled teen with a crush.

When it is time to pick a spouse, it becomes even more tricky. Not only does that potential life partner have to be kind to our sibling, he/she must be willing to buy into the fact that one day there will be some additional responsibilities placed upon us as a couple to care for this sibling once our parents are no longer able to do it. This takes a special kind of person. Someone who loves us enough to sincerely understand the concept of “for better or for worse” and really means it.

I recently thought about couples that I’ve known over the years where one of the pair has a disabled sibling. The siblings have conditions ranging from Down Syndrome, Autism, severe cerebral palsy, and other developmental and/or physical delays. Each of these people have married truly loving and supportive spouses that have the patience and kindness to support them in the difficult road that often has to be followed. We come with a good deal of emotional baggage when we’ve been raised in a home where our sibling’s needs often took precedence over our own.

I’m grateful to have found my husband who passed the litmus test with flying colors and continues to do so every day. Thankfully there are people out there who do. But for those of us who’ve grown up with a special needs sibling, we’ve unfortunately seen plenty of people through the years who fail the litmus test miserably.

images

Photo by Contributed Photo /Times Free Press

Anywhere Doors?

By Melissa Johnston Miles

On December 9, 2015

In Writing prompts

Writing Prompt:

Pick Your Gadget-Your local electronics store has just started selling time machines, anywhere doors, and invisibility helmets. You can only afford one. Which of these do you buy, and why?

This prompt immediately reminded me of the last Harry Potter novel when Harry, Ron and Hermione are discussing the Deathly Hallows, and each one picks the hallow that they perceive to be “the obvious” choice only to realize that they’d each chosen a different one. And they had good reasons for the choice based on their own lifetime experiences, as well as their strengths and weaknesses.

I imagine the same will hold true for this writing prompt. Each one of us who respond will be bringing our own unique background and experiences into our choice regarding which gadget we would choose. For me, it took only a moment to weigh each option and decide on the one that I would choose. It would definitely be the “anywhere doors” over the other two choices. My choice has to do as much with why I’d love to have a set of these doors as it does with why I wouldn’t want to own the invisibility helmet or the time machine.

I’m sure that I’ve said, “I’d love to be a fly on the wall” as much as anyone else. It is so tempting to want to observe situations that we can’t due to being a solid hunk of visible flesh. 🙂 However, as much as I’d love to be able to disappear at times, it does have major privacy and ethical issues. Just as I don’t particularly want the NSA listening to my phone calls, I don’t want anyone, friend or foe, to have the ability to spy on me without my knowledge. It’s just creepy. So I have to rule out the helmet and hope that anyone who knows me does the same!

Next, the time machine. This one was tougher, because who hasn’t wanted to time travel? To this day I love a good time travel story. But inevitably, toying around with the complexities of time travel is going to lead to trouble. Your current self will see your past self and think it’s insane. Or you will tinker with one small thing that will have tremendous ramifications for every future generation to come. It makes great novel fodder, but I think I’ll stick to my current time no matter how screwed up the world seems at the moment!

So, that leaves us with those doors. Now that is the gadget that truly tempts me, and seems to have the lowest probability to land me in serious hot water. Let’s say that in order for these doors to work, someone on “the other end” also has to have a set. I have family and friends all over the world. Many of my dear friends that we met while living in Germany are now scattered to the four corners of the world–literally. Also, my cousins live everywhere from New Hampshire to Washington State and many states scattered in between. What keeps us from visiting each other? The $2,000 in airline tickets we’d have to purchase for the family to visit! To be honest, our family would have extended our tour and stayed in Germany longer if maintaining family relationships back in the states had been as easy as walking through some doors. For me, this is the best choice of the three gadgets.

This was a great prompt, but seriously…can someone get onto the invention of these doors ASAP? I’ve posted a prototype of them in the picture I chose to go with this post. I’ll be in line for your first working set!

Pick Your Gadget

What I’ve learned in the Asperger’s Trenches

By Melissa Johnston Miles

On December 3, 2014

In autism, disability, discrimination, diversity, parenting

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

Life Lessons Learned on the Prairie

By Melissa Johnston Miles

On August 26, 2014

In Uncategorized

Years ago while working at a Children’s Hospital in Atlanta, I was frustrated that all staff were required to attend a “Shared Values” seminar. Apparently the management of the hospital felt that the employees needed a lesson in how to interact with each other and the public appropriately. I dutifully signed up for my session feeling dismayed that we all had to take the training. My initial thought to completing the class? If every adult had been raised watching “Little House on the Prairie” we wouldn’t have the need for courses like this!

It has been 20 years and I still believe this to be true. Look around at what is on the news today. Then think about the lessons taught each week to millions of young people around the world on the show. I’ll tell you what I learned from the Ingalls Family that has stayed with me for many years.

1. Our value doesn’t come from our profession or bank account. The Ingalls Family struggled to make ends meet from the very first episode of the show. Regardless of the hardships that hit the family they always survived through hard work and faith. They pulled together and always came through with an even stronger bond. The rich family in town could hardly stand each other, but were constantly looking down their noses at the “poor” families in the community. I distinctly remember when the financially wealthiest man in town says the he believes that Charles Ingalls is the richest man in Walnut Grove. Why? Because he realizes that the man’s wealth comes from something of much more value than plain old money. And as I child, I got that message loud and clear. Through “Pa” I also learned that only people with their noses stuck in the air thought that hard working people smelled bad. The messages a young person took from that show was that every job in a community had value. Whatever task you were setting yourself to, do it with pride and do the best job you can. Don’t worry what snobby people think or say about your job.

2. Prejudice is never okay. The show tackled it all over the years. Black characters were added over the show’s run and racism was tackled firmly but with humor. It was always amusing to see Harriet blubbering on trying to remove her foot from her mouth–the woman had no tact in any matter and dealing with people of a different skin color was no exception! But the show didn’t stop with race. There was the Jewish man who always wore a hat, causing Albert to finally ask him if he wore the hat to cover horns. The man laughed and explained his reason for keeping his head covered. There was the disability issue with the blindness of Mary and Adam. An old lady that the town considered a witch, but may have had some type of mental illness. An obese man who left town because he felt his daughter was ashamed of him. Basically the take home point to kids is that the world is full of many different people. They look different from you, have different beliefs and practices, and may do things differently than your family. But all people have equal worth. Treat them as such. When you don’t, people get hurt.

3. Your children don’t have to get everything they want!! Wow, here is a big one in modern day America. Imagine children being told no and denied the material things they want. But they would be so disappointed! Sometimes I wonder what Charles Ingalls would say to modern parents so eager to give their children everything they desire. The value of children having chores and earning money to pay for the things they want is all but lost from what I see all around me. Parents think they are terrible if they don’t give their kids the latest Iphone, tablet, car, wardrobe, whatever. The list of “wants” is endless. There was an episode of a popular network show where the parents couldn’t bear to “disappoint” their daughter by not allowing her to go off to an Ivy League school that she’d been accepted to an the opposite coast. So, they put the entire family in financial jeopardy instead of allowing their daughter to be disappointed. Pretty typical attitude for most parents these days unfortunately. Charles was a wonderful example that our children need parents, not another friend. Say “no” when that is the right answer to give and hold firm. Love your kids enough to teach them the value of working for things they want.

4. Find joy in the small things. I remember as a young child watching the awe and wonder that Laura and Mary had while finding an orange or peppermint stick in their stocking. Charles and Caroline ended a long day unwinding with a big bowl of popcorn in bed. Laughing at the kids splashing with a dog in the creek. Life was full of small things that brought big happiness to the Ingalls Family. In 2014, it is challenging to find the joy in the small things but the opportunities are all around us if we look for them.

Think for a moment about the lessons learned on the prairie. Wouldn’t many of the problems we see on the news just disappear if people lived their lives like Charles Ingalls and his family did? I think they would.