Please don’t think discrimination doesn’t exist just because you don’t see it

In many ways, getting older is about as appealing as extensive dental work without Novocaine. However, there is one aspect of approaching fifty that I’m grateful for, and that is the increased realization that my view of the world is largely limited to my own experiences. I see the world through my personal lenses, and the world reacts to me by what it sees: forty-something, middle class, educated, white, etc. How do I change the narrow way in which I view the world? It’s actually pretty simple, and yet so many people refuse to do it. Just listen to the people who face discrimination every single day and allow yourself a glimpse into their lives. Why is this so hard for people? Because when we aren’t the object of discrimination, it’s easy not to see it as a problem. The knee-jerk reaction is to either get defensive, or else just deny the existence of the issue entirely.

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Old Navy (Photo from Twitter)

This morning, The Today Show had a segment on a Tweet from Old Navy that featured a beautiful family. Apparently there are some outraged Twitter users who are refusing to go into Old Navy stores again because they chose to feature this couple. I was honestly surprised that this image would cause any kind of uproar. But it illustrates the point that I made above. My husband and I are from the same racial background. I’m sure if we weren’t, or if one of our young adult children decided to marry someone of a different race, we would all be acutely aware of the fact that people living among us in 2016 still react this strongly to the issue on interracial marriage. Even though it still saddens me (because I just can’t understand how this family is hurting anyone in any way), at least seeing this blurb on TV educates me to what interracial families deal with.

Our son has Asperger’s, which causes him to feel set apart from society in many ways. Imagine him at the age of twelve (as if middle school isn’t hard enough) being told by his church pastor that he couldn’t participate in the confirmation class being offered because she thought, “he wasn’t ready.” There was another middle school aged child in the class, but he wasn’t allowed. We pleaded with the church pastor on two separate occasions to allow him to be a part of the class, explaining how excluded he felt. But this woman, with all of her lofty ideals about inclusion, didn’t see any problem. To her it was evidently completely acceptable to exclude him. As a parent, this was heartbreaking and we no longer attend this church. But until the world makes an effort to understand what it is like not to process sensory information normally, to be unable to determine a person’s meaning from a facial expression or their body language, this type of discrimination will keep going on.

Also within the past week, I read a blog by a mom whose son is in a wheelchair. It was heartbreaking to think of her little boy stuck in his chair watching the other kids run and play. Even though I’m a pediatric nurse and I’ve taken care of children in wheelchairs, I had never put myself in the position of one of these precious children or their parents. I found a blog with images of a playground in Australia that has the great swing featured in the image below. My favorite part was a sign mounted at the entrance that said, “Access for All.” Whether we have a child in our lives with this need or not, we should all be aware of the problem and support these types of play areas. One amazing little girl I’ve taken care of in the past was excluded from almost every preschool in the area because her “disability” made her a liability. Until she is old enough to enter the public school system, her parents are at the mercy of private programs and how far they will stretch themselves to give her a place to participate in a school environment.

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Sir James Mitchell Park in Perth, Australia

I’ll apologize in advance if this blog sounded preachy. It isn’t meant to be. But, I’d love to see everyone make a conscious effort to view life through the lens of others who are different than us. We’ve all heard that expression about walking a mile in someone else’s moccasins. It’s taken from a poem by Mary T. Lathrap. I’ll end this post with her words in the opening lines.

Pray, don’t find fault with the man that limps,
Or stumbles along the road.
Unless you have worn the moccasins he wears,
Or stumbled beneath the same load.

The Litmus Test

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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.

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Photo by Contributed Photo /Times Free Press

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