On Acceptance and Unconditional Love of Autistic Children

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As a parent, I often wonder if my children feel as if I love them unconditionally. Recently, I finished reading “Love That Boy” by Ron Fournier.* The reason I chose the book? Well, when I read the excerpt, it made me cry. Why? The last part of the excerpt resonated with me. It’s all about acceptance and unconditional love.

*Disclosure: I received this book from Blogging for Books in exchange for my honest review. All opinions expressed herein are my own.

So, I will show you the last part of the excerpt from the book — the part that made me bawl uncontrollably for a few minutes before I got myself back together again. It goes like this:

“I hope I don’t let you down, Dad.”

What kind of father raises a son to worry about embarrassing his dad? I want to tell Tyler not to worry, that he’d never let me down. That there’s nothing wrong with being different. That I actually am proud of what makes him special. But we are next in line to meet the president of the United States in a room filled with fellow strivers, and all I can think about is the real possibility that Tyler might embarrass himself. Or, God forbid, me.

As I read those last few sentences, tears welled up in my eyes. Do I demonstrate true acceptance of my son? On the outside, maybe. On the inside, I worry all the time.

I feel compelled to be honest with you. First of all, I plowed through that book like a farmer reaping a harvest. As I read, I searched within myself for answers. This book made me think about the expectations I had of my son before his birth. Additionally, it made me think about how my expectations have changed over the years. While I pride myself on fighting for my son like I’m in a cage match where only one person leaves, I wonder how good a job I do of loving him unconditionally. It’s true. As his mother, I want the best for him.

So yeah, I want my son to be the best whatever he can be. But acceptance? Acceptance proves a more difficult challenge. Acceptance means I see him for who he is and I feel pride. If I think honestly and search within myself, I know I need to work on that. It’s not that my son doesn’t make me proud. Or even that he’s not a remarkable young man. No, it’s not that. It’s me and my expectations. Eventually, I must move from expectations to acceptance. Real acceptance.

Can you love your child and still feel embarrassed when he takes his clothes off in front of people? Of course. As I cringe on the inside, on the outside, I calmly remind him of his “Good Choices Chart.” Already, he’s got one X on his chart for failure to use kind words and a quiet voice. After counting to five, a practice he’s come to know as “Mom means business,” he’s still got his swimming trunks around his ankles.

What do I worry about here? That he’s disrobed and won’t pull up his shorts or that people at the pool have begun to stare. Do I feel that he will get embarrassed or do I feel embarrassed? Truth? He could give a rat’s behind what people think right now. He’s asked to leave the pool and I’ve gone too slow. He got my attention. Now that he’s received his X and gets the reminder that one more means no prize, he’s pulled it up (and pulled it together).

Our children know we love them. I’ve asked my sons if they know I love them, and they do. They know. But do they both equally feel the same level of acceptance? I need to work on that. After all, what matters more? That my children feel love or that they feel acceptance? I think they’re both equally important. I can set expectations for him based on what I know will create problems for him as he gets older, but that doesn’t mean I need to feel embarrassed about it. At risk of shoulding all over myself, I feel that I should just have this feeling of “nothing to see here, folks,” and handle the situation in a way that models both reasonable expectations and unconditional, all-accepting love.

So, at the end of the book, Fournier gives a few tips to parents that I think deserve some mention. After all, we’re all doing the best we can, but sometimes we just need the reminder from someone else about that one thing we haven’t tried doing yet. I won’t elaborate because I want to leave you to read the book yourself. It has a good message and tells the journey of a man who, while attempting to bond with his autistic child, finds the road to acceptance. So, here are your tips (from Fournier):

1. Don’t parent for the future, but for today. Fournier suggests we create small moments and then cherish them. Next weekend, we plan to take a trip to the zoo and I plan to enjoy every small moment of our trip.

little boy doing his homework 2. Guide, don’t push. We can guide our children along the path to success, but we should not push them. If you’re pushing, not only does your child feel pressured, but you do as well. For instance, my son wanted to try karate, so I signed him up. He earned a few belts, and then he stopped wanting to go. Do I pressure him to continue, or allow him to choose his own path? Honestly, if I had pushed him to continue, we both would have felt miserable.

3. Don’t beat yourself up. I need this reminder daily. No, I mean hourly. We all feel guilty sometimes, but Fournier states that we should not wallow in guilt. According to Madeline Levine, “anxious parents make anxious children,” so I’m glad my husband doesn’t feel nearly as anxious about, well, everything as I do. Take a deep breath. Relax. Let it go.

4. Celebrate all victories. Every time my son does something unexpected or new, we feel elated. Even the smallest of victories are still victories. My son decided today that he would compromise with his brother rather than fight with him about not doing things his way. This, my friends, is a victory. I felt so proud I shouted it out on Facebook.

5. Slow down. If you sign your child up for so many activities that you feel overwhelmed trying to keep up with them, maybe pick a couple he or she could do without. Refer to number 3 when you decide to let something go.

6. Make different cool. Guess what? Lots of people who defy societies “rules” do really cool things. What’s different about your child that makes him the good kind of special? Tell your children that not being sheeple is actually cool. While everyone else goes to the party and smokes weed, your child decides to stay home and read a book. Different. Cool.

7. Be a spouse first and a parent second. Honestly, I know my husband feels neglected and I need to work on that. Once our children leave our home, I don’t want us to feel like strangers to each other. We’ll be all we have left. That’s why it’s so important to keep the relationship alive.

8. Share. Sometimes the “bad” news is actually good news. When my son got diagnosed with autism spectrum disorder five years ago, we told everyone. They needed to know, research, and understand him. Not all autistic people are alike, but they share many characteristics, and sharing the diagnosis helps people understand. And if they don’t understand, you help them understand.

9. Fight for your children. Yes, raising a child takes a village. Sometimes that village needs a little push to step in, but you can get what you need for your child. If it takes 50 phone calls, bringing advocates to IEP meetings, or communicating that you accept no less than the absolute best from whomever cares for your child, it’s worth it. Never, ever give up on your child.

10. Channel your inner Aspie/Autism. There is so much to value about people on the spectrum. Maybe your child, like mine, lacks the ability to lie. Or, maybe your child knows more about dinosaurs than anyone else. That’s so cool! Not only that, but when you’re sad, your child may not understand why, but he or she picks up on it. I’ve mentioned before how my son responds to my feelings more than anyone else. He has so much empathy that I’m certain he feels my feelings on a deeper level. I can identify with that. I do the same thing (I call myself an emotion sponge). Think about all the good qualities that your child has that not only makes him or her different, but awesome.

As I reflect on my parenting and my thoughts while caring for my two children this summer, I feel that I still have a lot to work on, but I’m getting there. Acceptance and getting to know the awesomeness of your child can present some challenges, but it’s well worth it.

Begin your journey to acceptance. Tell me what’s awesome about your child.

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When I Let Go of a Stim That Caused Me Harm

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Everyone stims. Stim is short for sensory stimulation. Those of us on the autistic spectrum tend to have less control over our stims and the need to do so, but every human stims to a lesser or greater extent. Stimming is something that happens with emotion. That emotion can be good or bad, and for neurotypical people, those stims might often be less exaggerated.

I was diagnosed with Asperger’s syndrome later in life than most. When I look back at my younger years, I can see the stims I had and how being told off for “fidgeting” led to more meltdowns, especially as a teenager. As an adult, I’m more aware of my stims, and while I can still find them embarrassing if I catch myself stimming in public, I can also see their importance in helping me process.

There is a hugely positive side to stimming. I love the feeling of rubbing my hands up and down my thighs, the way it can calm me and make me relax. I love when I tap my thighs with my hands or click the lid of a pencil; it helps me focus. Tapping my fingers on my thumbs when walking alone at night in the dark (after work, for example) helps me feel safer. Rubbing my newly shaven head has replaced wrapping my fingers in my hair for a feeling of security. Sometimes just the pleasure of making a random clicking sound with my tongue can make me so intensely happy. My stims largely involve touch, but that clicking sound is the most beautiful thing at times.

As a teenager, one of the stims I picked up was scratching my arms. It went along with cutting myself (one of my forms of self-harm). The scratching came from feeling like I wanted to crawl out of my skin, and looking back, it’s one I developed after a particularly harrowing incident where I was held at knifepoint by another teenager I knew. I’m still not entirely sure why he did it, but it threw me into more chaos than I was already in, and the feeling of the scratching and the marks it made created a form of sensory relief.

The only thing is, it was easy to get carried away and scratch my arms bloody (this is possible even with the shortest of nails). And if anyone asked, it was easy to say my eczema was acting up (which it was through most of my teen years). It’s a stim I’ve since recognized as one to stop, because it often alternated with cutting my legs, and I started to associate them. They both involved a build-up of negative emotion. To be honest, I never thought I would be rid of the scratching. I could see no way out of it. Especially when things built up and my PTSD really kicked in. That was, until I met someone who has helped me stop.

In the past 18 months, I’ve exchanged scratching for rubbing my arms. It’s different from rubbing my thighs, as rubbing my thighs is always through clothing, whereas when I rub my arms, they are bare. I apply a lot of pressure when doing so, and whilst the visual aspect of the stim is not nearly as pleasing, the pressure works just as well and covers a larger area in one go. I’ve scratched once in the past 18 months. Once. And that was after a particularly bad build-up of emotion. How has this person helped me go from regular scratching to once in the past 18 months? Simple. I told this person how I equated the stim with my self-harm, and somehow, the more we talked, the more I felt able to let go of the stim, and I made a promise I would. One that on the grand scale of things, I have failed to uphold once. And considering the stim had been there since my early teen years, which was over half my life, that’s huge progress.

I’m starting to see that when I stim in public, it’s not a bad thing, and that it only tends to be my smaller stims, like the finger tapping, the occasional head rubbing, and tapping my thighs as I walk. I don’t vocally stim in public often.

If people want to give me funny looks, go ahead. I may look a little strange, but maybe next time someone asks you to stop tapping your foot when you’re nervous or clicking your pen, you’ll spare a thought for those of us who literally cannot control it.

A version of this post originally appeared on on The Ever Scribbling Nubbin.

Lead photo source: Thinkstock Images

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Young students, boy and girl, going to school. They hold hands. They hold hands. Children behind shoulders have satchels. Warm day in an early autumn. Back to school.

Drop the Deficit Mentality: Autistic People Have Dreams Too

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Sometimes people see a person on the autism spectrum and they think about all of the limitations. Truly, though, our autistic children have sparks inside of them that have yet to be ignited. When I look for those sparks in my son, I can see the abilities that have yet to be explored. Instead of thinking about what my son can’t do, I should spend more time focusing on what he can do. As Temple Grandin says, “There needs to be a lot more emphasis on what a child can do instead of what they cannot do.” On our bad days, I admit there is quite a bit of difficulty on focusing on the sparks inside of him. What if I focused on more on his strengths, though? 

10 Strengths My Autistic Son Demonstrates

1. He shows great ability to empathize with others. When I’m sad, he hugs me. When someone is hurt, he runs away because he cannot handle their pain. People assume autistic people have no empathy, but that’s not true. In fact, he shows a great deal of empathy.

2. His memory is fantastic. He can tell us what type of car passed by us with 100-percent accuracy every single time. He has memorized the symbols. Additionally, he knows what the body of each type of car looks like. Imagine the potential there.

3. In his mind, he can compute numbers using rules he learned long ago. He often challenges himself (and us) to figure out how to add multiple numbers together without actually writing them down.

4. A great capacity to love exists within him. He loves everybody. In fact, he shows us this all the time by giving hugs and kisses. Yes, that’s right, my son shows love.

5. When he sees a way to help someone, he jumps in and does it. He loves helping people. If we say something like, “Oh no! The cat is hungry. Who will feed her?” he literally runs toward the cat food and feeds the cat before anyone else can take his job.

6. Imagination. Yes, he has an imagination. He can imagine and act out what the dog might say when he refuses to go outside. He can imagine, but he has a hard time putting it into words or writing it down. Listen to him speak, though, and you hear it.

7. His self-awareness is outstanding. I can see that he understands what he has a hard time with and what he does well. He knows if he sees storm clouds coming, he will need his headphones. If there is a crowd, he knows he will need to find a safe space to take a break. I only wish other people were more aware of how to help him during these times because sometimes he doesn’t have what he needs even if he knows he will have trouble. This is not a weakness on his part. He knows what he needs. What he really needs is more people who understand his needs.

8. He keeps his brother safe. Given his past experiences, he can recognize signs of danger and will fiercely protect his brother.

9. Some say that flattery will get you nowhere, but my son knows how to schmooze for sure. Indeed, he tells just about every woman he meets how beautiful she is. He also tells men they are handsome. His newest thing is to say, “I’m going to tell on you,” and then he tells someone how someone has been nice to him or how someone has helped someone else out. He means every word of what he says, and genuine compliments mean more than the empty ones some people give.

10. This beautiful child of mine knows how to work a schedule, tell time, and, in fact, keeps us on schedule. If I listened to him more often, I would probably be late less often. My new strategy is to tell him what time we need to leave the house. He will always tell me when it is time to leave.

Why We Shouldn’t Ignore These Sparks of Intelligence

As Temple Grandin says, “You have got to keep autistic children engaged with the world. You cannot let them tune out.” How often do we tune out children? How often do we speak about them as if they aren’t there? How often do we fail to allow them to use their strengths to engage with the world? Dr. Lovaas says, “If they can’t learn the way we teach, we teach the way they learn.” All of this makes sense. Take a look at my son’s strengths. See the potential. He deserves to learn and be around other people and feel loved for who he is even if sometimes it becomes difficult for him. Where you see a spark, there is a fire. And when you see a fire, you look for tinder to keep the fire going. It’s time to stop extinguishing the sparks in our children and see their potential.

What sparks will you ignite in your child today?

Originally posted on EmbracingtheSpectrum.com.

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A 9-Year-Old on the Autism Spectrum Explains What It's Like to 'Think Outside the Box'

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Today I’m going to share with you what it is like, for me, to “think out of the box.” This is exactly the way I explained it to my mom, and she typed it out word-for-word for me last night while I explained it to her. I asked her to put it on my blog.

Me: “Mom, you know I always think out of the box, but sometimes it’s good and sometimes it’s bad.”

Mom: “Kai, it’s never bad to think outside the box.”

Me: “I know, what I mean is that sometimes I thinks so far outside the box, that it’s like being on right on the edge, and you hold on and hold on until someone pulls you back up.

So pretend your box is a little house. Pretend you’re on the cliff of a mountain, on all sides it’s just square, square, square – and the mountain’s a billion thousand meters high. And you think out of your box.

So pretend the box is your house. You think out of it, like you go out of your box, and the distance from the side of your box to the edge of the mountain is half a ruler space. You walk out of your box, and you’re thinking too much out of the box – you’re walking too near to the edge of the cliff, and then when you think way out of the box, that means you walk so far – further than the half a ruler space, and suddenly you fall down, but luckily you quickly grab the edge of the mountain.

Somebody sees your fingers there (but you don’t know) – this person just climbed the mountain to meet mighty-mighty eagle (me). Luckily that person grabs mighty-mighty eagle’s hands – pretend mighty-mighty eagle has hands. Then you get right back into your small box, and that is like thinking out of the box.

So I’m not saying you must not think out of the box. You must, except you mustn’t think about whatever you’re thinking about outside the box too much because then you can fall off the cliff and nobody is there to help you. Unless of course you have wings.”

Mom: “So how often do you think outside the box?”

Me: “Twice a day at least!”

About Me: I’m Kai and I’m 9 years old. My mom typed this for me because she never allows me to type on her laptop! But this is my story word for word.

Image via Thinkstock.

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10 Words That Describe a Parent of a Child on the Autism Spectrum

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What does it take to be a parent of someone with autism? I’ve been pondering the question lately. (Now that my children are adults, I actually have time for reflection.) I am the parent of two, one with Asperger’s syndrome and the other who’s not on the autism spectrum. Did I raise my children differently? The short answer is: Not really. Both of them have my unconditional love and attention. But I do think that having a child with special needs made me dig deep into my soul’s reservoir and activate the personality traits necessary to help him flourish.

So what are those traits? What words just pop into your mind to describe a parent of a child on the autism spectrum? I asked my autism community on Facebook this question, and the post exploded with responses! Using the community’s input and my own personal opinion, here is my top 10 list:

1. Genuine

Lydia Wayman posted this word. She is a young woman on the autism spectrum, and she encounters parents at her speaking engagements and when she works at an autism resource center. She’s right. Every parent of a child on the autism spectrum I’ve been fortunate to meet in person or online is authentic and genuine. There is no pretense. What you see is what they are. None of us has time to put on airs.

2. Unstoppable

Does the Energizer Bunny come to mind? We don’t have the luxury of slowing down as
we must keep on going and going and going to make sure are kids are receiving the best care and support possible.

3. Over-Caffeinated

Many posted “tired,” “exhausted,” but Rebecca Marcincak’s “over-caffeinated” acknowledges our collective fatigue and the fact that we push through (using whatever means possible). There’s no time to catch up on our sleep because our kids need us. So, double shot of espresso or another strong cup of tea please and I’ll be on my way!

4. Humorous

Life is just so much better when you approach it with a sense of humor. I’ve seen a huge transformation in my son over the years. He used to take everything so seriously, but as he’s matured and gained self-confidence, he pokes fun at life (with a twinkle in his eye) and takes pride in being able to make others laugh.

I also think of Brent Anderson, an adult on the spectrum and popular speaker, who
enjoys sharing his literal mind and his “Unintentional Humor.”

5. Fearless

I’ll bet you never thought of yourself as fearless. I know I didn’t. But I believe we are. There is no manual for raising a child on the autism spectrum. And there isn’t a central information hub for finding resources — therapies, schools, independent living, and employment. It’s up to us to seek those resources out and, often, fight for them.

6. Ever-Vigilant

We never let down our guards. Our ears are tuned to conversations — are they making fun of my child? Our eyes are constantly scanning left and right — is everything OK? Even though he’s an adult and living independently, I’m always aware of what’s happening in my son’s life to make sure he is safe and secure.

7. Selfless

Our children first. Helping others in our autism community second. We’re committed and concerned about the needs of others first before ours.

8. Scared

We try not to worry or think about the future. We’ve all seen the statistics so, yes, we’re scared. But we’re not stopped by our fears, and we all try to take it one day at a time.

9. Brave

The word “warrior” came up several times. I like to imagine myself as the Asgardian warrior, Sif, battling my way through the world to clear a path for my son. Fantasy aside, it’s parents like Sharon Cummings who embody the warrior spirit. She’s just one mom who bravely stepped out her comfort zone to make a difference for her autistic son and the special needs community at large.

10. Awesome!

Just like their children…

So, what words would you include on our list?

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11 Tips for Students With Autism Who Are Entering College

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College can often be a difficult transition for those on the autism spectrum. When I was growing up on autism spectrum, getting into college was my first big dream. Now that I’ve graduated, I’m currently pursuing my doctoral degree.

I wanted to share 11 questions I frequently get asked by from students on the autism spectrum who are pursuing a post-secondary education.

1. As a college student affected by autism, what is one of the main things I need to know?

A big difference between college and high school is that in high school you generally have a structured plan for your accommodations called an individualized education program (IEP). However, in college that no longer exists, so you must advocate to your disability support group on campus to receive your own accommodations

2. What are some accommodations I can receive in my classes?

Individuals on the spectrum receive accommodations only if they register with their disability support group. They will then receive accommodations based on their needs. This can include extended time on tests, tape recorders for classes, individual note takers, etc.

3. Do I have to pay for accommodations?

Under The Americans with Disabilities Act of 1990, colleges are required to provide all learning disabled individuals with “reasonable accommodations.” However, you should check the guidelines in regards to what is and what is not available on your campus.

4. Will faculty or fellow students be informed that I am on the autism spectrum?

Faculty members are not allowed to disclose any information about a student to others without consent from the student. However, students must register as a “disabled student” to receive accommodations, meaning your disability support group would be aware you have a disability. It is then up to you to inform your instructors.

5. Is on-campus living for me?

Accommodations can also factor into your living arrangements on campus. For example, you may have an opportunity to have a single room if needed. Ask if your resident assistant will be made aware of your living situation, since he/she can be of help in an emergency.

6. Will tutoring be available for my courses?

Most colleges provide tutoring for all students, but it’s important to learn about those services early on to see if it is available and if you need additional support.

7. Are there any restrictions on how many courses I can take?

Some disability support groups require you take less courses in your first few semesters of college to make for an easier transition.

8. Is there a club on campus that raises awareness about autism and provides social opportunities for students affected by autism?

Autism Speaks’ college program, Autism Speaks U, works with students across the county to start chapters that raise awareness and funds. Some also establish mentoring programs for students and youth on the autism spectrum. To see if a chapter exists on your campus, visit www.AutismSpeaks.org/U.

9. Will my professors have any previous training in educating individuals affected by autism?

There is no requirement at most college for professors to have education in teaching
individuals with learning disabilities
. You should be prepared to advocate for yourself when a situation deems itself appropriate to do so.

10. Will I be treated differently by fellow students because I have autism?

Like in any other situation where you are around people, there is the possibility of a lack of awareness on their part in dealing with people with learning disabilities. Therefore, spreading awareness is crucial for you and others affected by autism.

11. Is there anything on campus that focuses on post-college plans for individuals affected by autism?

Many colleges have a career program/center that focuses on helping you network with outside companies. You can also look under the Americans with Disabilities Act for information about job accommodations and workshops.

I wish all the incoming students with autism a wonderful college experience! Have fun, study hard and remember each day what you are working to achieve. That’s the key more than anything else to succeed and thrive in college.

In 2015, I contributed a chapter to a book called “College for Students with Disabilities: We Do Belong” that shares the experience of several individuals with disabilities who have successfully navigated a post-secondary education and graduated. You can learn more about the book here.

This post first appeared on KerryMagro.com.

Lead photo source: Thinkstock Images

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