Being Elizabeth’s big sister has taught me more life lessons than I can count. I had no idea just how much the Lord is able to use my pain for His glory until I experienced what it’s like to be the big sister of a little girl with autism spectrum disorder (ASD).
She Calls Me ‘Kiss’
When I look at Elizabeth,
What I hope to see
Is the sweet child that hides behind
The eyes that gaze at me.
When I look at Elizabeth,
What I would love to see
Is the girl who’s chosen a nickname
Which means so much to me.
Elizabeth is slowly learning
The importance of our names,
And how she can refer to us
In both times of sun and rain.
The name she uses just for me
Is a sweet name I’ll never miss –
My little two-year-old sister
Is the one who calls me ‘Kiss.’
I suppose it’ll be a while yet
Before I understand her mind,
But in the months that follow here,
I simply desire to be kind.
Being a big sister to a child like Elizabeth comes with a dozen daily struggles.
I am challenged every day to care for her in the right, loving, godly way, and more often than not, my efforts fall short. I think that’s because for most of this time, I’ve been relying on my own strength to get through each day … instead of allowing the Lord to love her through me.
Recently, I’ve been adhering to the belief that it will always be this way, that she’ll struggle with her emotions and understanding of the world for years to come. When I stop to watch her, however, I see improvement every day. If I don’t focus on her setbacks, I see the beautiful progress she’s making. When I trust that the Lord is working in her heart, I don’t fall into despair … I give her room to grow.
I’m praying that the Lord will continue to work in my heart, that He will teach me how to love her constantly. I don’t want to only be happy with her and enjoy her presence when she’s having a good day. I desire to care for her in the moments when she doesn’t understand, when she’s trying to understand … because the thing about autism is that she’s not giving me a hard time; she’s having a hard time. That’s a quote I read recently that really spoke to me, because I have to remember that when Elizabeth’s upset about something, she isn’t deliberately throwing a fit, or trying to ruin our day … she’s in just as much pain as we are, if not more.
Living with two autistic siblings has taught me so much more than I would have realized. It’s teaching me how to truly love someone, and how to care for them as the Lord does. It takes a special deepness of love – strength that only the Lord has! – to unconditionally adore people who are different, who have bigger struggles.
I’m praying that I won’t take this time of learning for granted, that I won’t wish it away … I’m praying that I’ll embrace it from here on out.
The inspiration for this poem and post is based on the fact that Elizabeth calls me ‘Kiss.’ She has confused my name with my mom’s occasional encouragement to her to give me a kiss on the cheek, which is both weird and absolutely adorable. The fact that she refers to me by how we show affection to each other honestly touches my heart. It’s the little blessings like this that make life worth living.
My younger brother, Joshua (14), and my little sister, Elizabeth (2), both have forms of autism.
Joshua has Asperger’s Syndrome. On the spectrum, he has what’s considered “high functioning” autism spectrum disorder (ASD), which means that some of what he does is like the average person, but several of his personality traits are different and enhanced.
Elizabeth has a stronger form of autism. Her behavior, mental processes, functionality, emotions – all of these things are affected by the way her brain works.
I have met different people who have said something about my siblings’ autism that has really rubbed me the wrong way.
While talking about Joshua’s high functioning autism, the only way these people knew how to respond was by saying, “But he [Joshua] is so smart.”
Autism, just like many other disorders, is tainted by common misconceptions.
By pointing out how smart Joshua is (which he is, by the way), that’s saying that he can’t have Asperger’s since he is intelligent.
Autism, in its many shapes and forms, affects how individuals learn things and see the world. It does not mean that they’re naïve, dumb, stupid, or any other unkind word that’s often silently associated with disorders.
By denoting that ASD is “not normal,” we’re saying that we’re right and they’re wrong.
The truth is, the average person tends to be balanced in their abilities – their strengths and weaknesses. In contrast, the autistic person experiences much less balance in their life. Their responses to things can be unpredictable and often intense. As well as this, they excel in areas of thinking and performing that the average person couldn’t ever dream of achieving.
Isn’t that a beautiful thing?
There are people in this world who are wired differently than the masses.
These are the people who have found ways of inventing things and fixing problems that we never would have thought possible of accomplishing!
Elizabeth is the most unique, quirky toddler I’ve ever met. Her transition into toddlerhood was a rocky one, to be sure, but she has so many bright and fun moments, it more than makes up for the hardships she faces. Our family adores watching her, and we’re all excited with each and every bit of progress she makes. She’s making large strides in her understanding of language and communication, as well as how the world works. This sweet little girl is in my prayers often, because I want her to grow up in a family who’s willing to learn about how her brain processes things so that we can effectively teach and help her.
When I think of autism spectrum disorder now, I no longer stereotype it. I can see that their are huge differences in every autistic individual, and I certainly don’t see it as a handicap anymore.
Every autistic person deserves to be treated with love, kindness, and understanding – just like every person on this planet does.
For this post, Joshua has graciously agreed to answer nine questions I’ve asked him on this topic. I’m very happy to provide an inside look on how a high-functioning autistic person sees autism. Thanks again, Joshua!
My Interview With Joshua On Autism
1. Do you see Asperger’s syndrome as a disorder? Why or why not?
I don’t see it as a disorder. It just shows I’m unique in certain ways.
2. What are the pros of Asperger’s for you?
If I’m interested in something, I’m really good at it. I can take a lot of stimulation.
3. What are the cons?
I forget things easily – like names, [and] if someone asks me to do something, I’m not actually focused on what they’re saying. If I don’t like something, I really don’t like it.
4. Mom mentioned that when you were younger, you stuck to a strict routine (with food and daily habits), but now you are much more adventurous. Why do you think you’ve made that change?
I’m able to enjoy life more by being dangerous and exploring things – for example, getting about six feet of air off a bike ramp. Being a daredevil’s a lot of fun.
5. Our family knows how optimistic you are. How are you able to keep such a positive outlook on life?
Because being negative doesn’t bring me up at all, so I’ve just stuck to a positive aspect …. All in all, just being positive, it gets rid of negativity. If you’re negative, it isn’t gonna help you. If you’re positive, it will help you.
6. What do you want others to know about autism?
- Don’t judge someone because of them being autistic. Some people can have slight stages [forms] of autism, and others have stronger ones.
- Don’t stare.
- Don’t be afraid to ask [an autistic child’s] guardian about their child so you can learn more about autism.
7. How do you want other people to look at Elizabeth?
Just respect her and don’t make fun of her.
8. Thank you for letting me interview you. Is there anything else you’d like to add?
My autism is actually very helpful, and not much negative, which is nice. Autism is just the way somebody looks at life – it’s not crippling, it’s not a disease … it can affect some people more than others.
In conclusion, I am very passionate about protecting my sweet siblings. I’d love to educate people and allow them to learn more about autism specifically, because these special kinds of people don’t deserve the wrong, awful stereotypes that are associated with them.
If you met Joshua, you’d see a boy who’s passionate and talkative about what he’s interested in. You’d see a guy who cares about people way more than the average boy his age. You wouldn’t see Asperger’s syndrome unless you knew he had it before you met him.
If you met Elizabeth, you’d see a toddler who’s insanely curious about the world around her. You’d see a child who lights up when she’s able to communicate what she’s feeling and needing, and you’d see a girl who adores animals and being creative. You wouldn’t see autism unless you were aware of her having it.
Just like all of us, people with autism have good days and bad days. Learning to help my little brother and sister through both kinds of days is causing me to grow as a person, in ways I never would have imagined possible. I am beyond grateful for the Lord’s hand in all of this … I know He has beautiful plans for all of us.
Hi guys! I hope you’re having a beautiful weekend! Today, I’m here to talk about some things that have been on my heart recently, and they all happen to be topics I never bring up in the blogging world. That’s not to say I’ve been hiding them, because there are SO many things that we experience and feel, and it would be near impossible to write about them all! So, I’m here to be a bit vulnerable with you today, and I would love to connect with others who are going through something similar to what I’m experiencing right now! I’ll be here to support you (:
If you haven’t already scrolled down to see what the three things are (I know you totally did, lol), I’ll share them with you now!
1. I am extremely introverted and suffer from social anxiety.
Online, this personality trait doesn’t in any way shine through. I love reaching out to new bloggers all the time, and I enjoy having conversations with others via comments and/or email. To all the people who know me in real life, however, I am a different person. I’m beginning to think that maybe my blogger self (or the real life me, either way) is the other’s alter ego, they are such polar opposites! I struggle to have basic conversations with new people, I consistently go out of my way to avoid interaction with others when I’m out and about (i.e. choosing self-checkout instead of the regular register), and I especially feel awkward about striking up conversation with anyone outside of my family.
This is not because I’m lacking in social skills.
I’ve been bullied.
Since I was ten years old, I have been [periodically] dealing with cyberbullying, exclusion from church groups, and just your average bullying, too. People don’t like me, guys. lol But that’s not true about everyone! The nice people that I do meet, I struggle to get along with because I’m blaming myself for other people hating me without cause. lol I live a sad life, y’all.
But there’s hope!!
I am not staying in any social situation that’s bad for me. Family, friends, church … online, real life – if it affects me negatively, I leave it.
I am learning to see the abuse I have endured for what it is; a problem of the accuser, not my own. It’s not my fault; I am simply the target of their anger and depression.
The past is behind me. I desire to slowly get more comfortable reaching out to others in real life, in the smallest of ways, and letting whatever might come at me slide right off me.
I found a few books at the library yesterday that will help me with this!! If I enjoy reading them, you will most likely see a post or two on them in the future.
Now, on to my second point.
2. I have a sensory processing disorder.
Since childhood, I was known to respond to physical and audible stimuli more intensely than most. Loud sounds were very bothersome. I hated getting hurt. I was extremely ticklish and didn’t like being touched. I also found strong smells/odors very offensive and overwhelming. On the positive side, I was able to hear conversations that were being had in the house rooms away from where I was. I had a very good ear for the tones of voices and, over the years, have developed a strong ability to accurately impersonate many different people.
The traits that I mentioned above have carried over into my life as a young adult, as well. When it comes to how I react to being touched, hearing loud noises, and smelling something strong, as well, everything feels more intense to me than others. It is very bothersome, and as I am only just beginning to understand this about myself, it is quite hard to take in. Truthfully,
The fact that ‘disorder’ is in the official term was upsetting to me.
When I think of disorders, I don’t picture something like this. I see a disorder as something different from everyone else, and I don’t want to be different; I want to fit in. I suddenly felt like I was not like everyone else … but that isn’t the case at all.
I was beginning to let this shape the view I have of myself, instead of letting it be the answer to my problems.
When I realized that, I was instantly able to overcome that anxiety! I am so thankful that the Lord led me through this, because it got off to a rather rocky start. ❤
I found a book at the library on this subject, as well. (If you couldn’t already tell, this enlightening library visit is what prompted this post, haha!) I really hope that it helps me – I’m sure I’ll get at least a little something out of it! – and if I do, I’ll share my findings with you guys.
On to my third point. This is the most apparent one, as it has shown itself in little ways during my time of blogging!
3. I am a perfectionist.
Is this one a shocker?? Probably not, haha!! The May blogging challenge is proof of this – not the challenge itself, but keeping up with my normal post schedule most of those days, too! My mom pointed that fact out to me when I was later trying to figure out why I was so stressed throughout May, LOL.
But my perfectionism is not, and I repeat, not isolated to my blogging life.
If I’m going to play a game, or make a craft, or bake a cake, etc, the finished product has to be perfect, or I absolutely despise it and get upset at myself for failing my own unattainable goals. *sighs* The cycle is endless.
Instead of learning from past mistakes, I get upset at myself for what I just did!
I know that there are many other perfectionists out there, and that there are all forms and levels of it. The one thing I do know is that mine hinders my happiness in many ways, and that there are steps I can take at overcoming it – or, at the very least, toning it down.
If you guessed that I found a few book on perfectionism at the library, then you’re absolutely right, haha! I’m very excited about this one, actually – not because it’s more exciting than the other books I found, as they all look great, but I had no idea there were books like this out there! I can’t wait to read it!
Here’s the list of the books I found, if you’re interested in checking them out yourself:
- Quiet Influence: The Introvert’s Guide to Making a Difference by Jennifer B. Kahnweiler, PhD
- The Happy Introvert by Elizabeth Wagele
- The Highly Sensitive Person’s Survival Guide by Ted Zeff, PhD
- The Everything Guide to Coping with Perfectionism by Ellen Bowers, PhD
Thank you sooo much for reading today’s post! It gave me such joy to write all about this, and I would love to talk to you in the comments below. x