20 Things That Parenting a Child With Special Needs Has Taught Me About Life In General

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I am married, have two children, and I’m still growing. Each day provides opportunities for education about my inner self, about relationships, and about life. Many of these lessons were learned when my youngest son, who has autism, was very little. His needs during that time could certainly be described as “special.” I love and respect my son, and wanted to do whatever I could to support him and help him to thrive. That’s when I slowly began to develop some guiding principles that still I try to remember when I find myself in difficult situations… I TRY to remember. I may have learned these things, but that doesn’t mean I have mastered them. I am still a work in progress. Here is my list so far of things that parenting a child with special needs has taught me about life in general:

  1. Beauty can be found in unexpected places. This first one may sound trite, but is an essential truth I cling to. Life can present us with struggles, yet it is in the midst of darkness that we truly appreciate the light. During our journey I have learned about strength, love, perseverance, and forgiveness. I have also met some amazing people along the way.
  1. Embrace what makes life unique. The world is full of opportunities for adventure. It is also populated by a gloriously diverse people who have a lot to teach us, and deserve our respect and acceptance. Different is AWESOME, and can provide a refreshing new perspective on things. In my house we call it “Not Boring.”
  1. Parenting can be hard sometimes. Special-needs or not, it can be exhausting to have another human being be dependent on you for all their needs. That doesn’t mean that our children are a burden, because we LOVE them. However, full schedules, perpetual problem-solving, and things like constant medical concerns can make us weary.
  1. Ask for what you need. The people in our life don’t always know how best to help us. They may also assume we don’t need anything if we don’t ask, so speak up. Sometimes we require assistance to get through. It’s not selfish or weak to ask for help.
  1. There will be periods in our life where it feels like we take more than we give. This can be especially hard for caregivers to accept. Remember that our worth is not defined solely by what we do for others. There will be other times in your life when you will be in a position to help someone else who is in need. The scales are never balanced.
  1. You are stronger than you think. “I don’t know how you do it,” I have heard people say. We just do what we have to. I think we often underestimate our own abilities and don’t realize how strong we are until given an opportunity to flex our muscles. I am immensely impressed by the strength and resilience displayed by my son, and some of the obstacles that he has overcome. The power of the human spirit never ceases to amaze me, and adversity can teach us and help us to grow. But it is important to remember this next one…

Continue reading

Autism & Empathy (A LOT of it)

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There is a common misconception that people who have Autism lack empathy. I beg to differ. Autistic people may have difficulty at times understanding the emotions of others around them (honestly, don’t we all?), but that does not mean that they lack empathy. They may just respond to the feelings of others in an unconventional way, and we need to work harder to understand and appreciate those reactions.

My youngest son is Autistic and cares very much about his family and friends. Hugs might be a little too tight or knock you down, but they are meant with every inch of his body. The intensity of his Big Feelings can also cause him to act out at times, and the Little Ninja has needed coaching over the years to learn how to more properly express his empathy. For example, when he was four years old we needed to do some allergy testing on his big brother. It took all the strength of both the nurse and me to hold the Big Ninja down for the blood draw, and he cried and was very upset. That was too much for my tiny vigilante to handle. When we were done my youngest rushed at the legs of the nurse and started swinging, yelling, “You leave my brother alone!” Luckily she was a good sport about it, and was impressed at the passionate way he defended his big brother. I had a talk with him later about finding less physical ways to stand up for people. This is an especially important lesson for the times that he misinterprets a situation because he can come off looking as the aggressor.

There are other times that my son feels so intensely for other people that he is overwhelmed by his emotions and doesn’t know what to do with it. Continue reading

Way To Go, Kelly Jo!

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During a recent family outing to a theme park I decided to ride a terrifying roller coaster for the very first time. The park had just opened so there weren’t many people around yet, and I walked to the seats in the very back. My husband and children declined the opportunity to join me for this particular ride because they’re not fond of extreme heights ;-). A lady walked up and asked if she could ride with me. I responded that I was happy for the company.

We started chatting and she told me that her name was Kelly Jo and that this was her first summer since losing 100 pounds! She was incredibly excited to be riding this roller coaster because she was never able to fit into the seats before. As she told her wonderful story I found myself tearing up. I then asked if I could share her story with you, and she graciously agreed. She said she lost the weight simply by changing her diet and exercising. I found her story especially inspiring due to some recent personal struggles. I was also thrilled and honored that I could share such a fun and incredibly meaningful experience with her.

We totally crushed that coaster, and the picture at the top of the post is our celebratory pose afterwards. Awesome job, Kelly Jo, and I am so glad to have met you! Thank you for sharing your exciting, happy story!  I am sure you have many more adventures ahead.

My own children had a recent victory of their own at the theme park. They used to be terrified of all roller coasters and this is the first summer they have even been willing to entertain the thought. We rode a couple small ones at first, and even then it took a lot of explanation and prep work. Then one day they simply walked onto a new roller coaster and trusted me that they would be okay, without knowing any details about the coaster (other than the fact that it didn’t go upside down). And guess what? They LOVED it. They didn’t even get upset when it got really dark.

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Victory is ours! This is a BIG DEAL, and it’s about more than just roller coasters. Most of you know that with spectrum disorders comes a lot of anxiety. BatDad and I try to walk a fine line between respecting the Ninjas’ sensibilities and also encouraging them to try new things. I am incredibly proud of them, and took the above picture when they were done. They conquered the coaster AND their fears. Anxiety: 0, Fun: 1

Who knew that a theme park could also provide opportunities to celebrate overcoming personal obstacles?

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Is It Summer Yet?

There is still over a month left in the school year for my children, but I am pretty sure I hit a wall this week. Somewhere between recent school projects, Standardized Testing review, and my complete and utter failure at appreciating my boys’ teachers during Teacher Appreciation week I hit critical mass. It was all I could do to drag myself out of bed this morning and pack lunches… AGAIN. And it happened earlier this year than in years past.

I was reminded of a picture from two years ago, so I dug it out.  This was the state of the Littlest Ninja’s backpack when there was two weeks left in the school year. That little safety pin had been bravely hanging on, holding the ripped pieces together, but finally just said, “Screw it. I give up.”

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I looked at the pitiful sight and I was all, “I know, Backpack. I KNOWWWW.”

Is it summer yet? I am ready for relaxed schedules and days spent at the pool.

I am also fully aware that it won’t be long until I am asking, “Is it time for them to go back to school yet?” But today, I am that backpack. Or maybe the safety pin, I dunno. But you get the analogy.

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Bill’s Message to Reba McEntire (He is her NUMBER ONE FAN!)

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Remember our awesome friend Bill? He does so much to brighten the lives of so many that I thought it would be nice if we did something for HIM. As I mentioned before, Bill is a HUGE fan of Reba McEntire. His birthday is May 13 and what he wants more than anything is simply for Reba to wish him a Happy Birthday.

Bill recorded this video for Reba to tell her how much he loves her and that he is her “NUMBER ONE FAN!” (He also has strong words of warning for anyone who would mess with “my girl Reba.”)  We posted his message here in the hopes that Reba might see it. Please share it if you want to help spread the word, & thank you for watching his video!

Also, please share any birthday greetings you have for Bill in the comments. It would mean the world to him. More than anything I wish my wonderful friend a birthday FULL of joy.

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What Bill Has to Teach Us

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This is Bill, and Bill is SERIOUSLY Not Boring. He is 50 years old (almost 51!), lives with his sister who is his loving caretaker, and his favorite things are his sister’s homemade cookies, his nieces and nephews, and Reba McEntire. Bill has Down Syndrome, and he has a lot to teach the rest of us about love and enthusiasm. Bill has some BIG feelings, and it is contagious.

I had the privilege of meeting Bill this winter. We were at a chili cookoff at our church, I introduced myself and we started talking. He started telling me about his nieces and nephews (he has their pictures in his wallet and proudly shows them to everyone he meets) and how much he loves kids. He told me that he would like to help and volunteer with the children’s activities at our church. I found it interesting he would mention that to me since I am not involved in the leadership of that ministry. I think now that it was divine intervention. I told him his idea sounded great, and that I would have to talk with his sister and the children’s ministry leadership and I would get back with him.

Then you know what I did? I am shamed to say, not very much. His sister agreed that he could help out and that she could bring him. I mentioned it via text or FB to a couple people involved with the ministry and didn’t receive a response. I don’t think they realized I was asking permission to move forward, OR they didn’t see my message. It was an incredibly busy time of year so I let the issue drop for a couple months. I didn’t want to overstep my bounds, and I knew that helping Bill get involved would take a bit of logistical work. I was worried that people would see that as an inconvenience (as an aside, that is exactly why a lot of families of children with special needs avoid church, because they are afraid their children would be seen as an inconvenience). I should have given more credit to my church and the loving people that are a part of it.  Continue reading

The Top Five Autism-Related Posts from Seriously Not Boring

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Another Autism Awareness/Acceptance/Action month is drawing to a close, and I hope that everyone’s efforts made a difference. This world becomes a better place every time someone new reads about Autism and learns to be more accepting. To close out the month here are this page’s Top Five posts about Autism in the hopes that you might find them helpful. These are the topics that seem to have resonated the most with readers, even years later. I feel honored and overwhelmed that when we share our journey it has the potential to help others.

#5. Autism, Meltdowns, and the Unexpected Kindness of Strangers in a Supermarket. Many years ago, when the Ninjas were very small, we were new to the Autism world and spent a lot of time feeling confused and overwhelmed. A difficult incident happened in a grocery store, but the graciousness and compassion showed to us by the employees there helped us through it. I wrote this piece for the Parents Magazine special needs blog. NOTE: This is a change from the original article that was featured at #5. Because reasons.

#4. The Talk: How I explained my son’s Autism diagnosis to him.

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There is no shame in Autism. When my son was old enough I wanted to explain his unique brain to him in a positive way, because how you do it is incredibly important and can affect a child’s self-image for the rest of their life. I wrote: “… I had to be very careful with my words and how I presented Autism. There is still so much stigma in attached to special needs, or even to simply being different (not in my mind, but society seems to feel otherwise). I didn’t want him to see himself as flawed, or view his diagnosis as restrictive, limiting his expectations of what he could achieve in life. I did not want the truth to be damaging. I wanted it to be illuminative and empowering. I hoped that having knowledge of Autism would improve his understanding of how his brain works and help him be more patient with himself.” A version of this story also appeared on the website The MightyContinue reading

Autism, Meltdowns, and the Unexpected Kindness of Strangers in a Supermarket

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(Excerpted from original article at Parents.com) I have been a parent for over ten years now, and for a large part of those years I have also been an Autism parent. It has been quite the eventful journey; full of twists, turns, and lessons along the way. In my house we call it “Not Boring,” and have come to celebrate my son’s uniqueness. Back when my two boys were small and I was new to the Autism world, however, I spent a lot of time feeling confused and overwhelmed. I wish I could go back in time and reassure that worried mother, “Everything is going to be okay.”

One day in particular stands out in my mind. Many years ago I attempted the ambitious feat of grocery shopping with two small boys. Our trip to Kroger took longer than I would have liked, and the sights and sounds became overwhelming for my youngest. At the time he was pre-verbal, and his lack of ability to communicate seemed to heighten his moments of frustration. At that point I knew that he was facing developmental delays, and suspected Autism, but I had not discovered how to best help him when he became upset. I also had not yet learned all his triggers, and constantly walked around in a state of high alert because I never knew what the day would bring.

We finally finished shopping and approached the checkout counter to pay. I abruptly took a package of rice cakes out of the hands of my youngest son without thinking, and placed them on the conveyor belt. He was surprised and upset, because rice cakes were his favorite food at the time. A scream came out of his mouth and he took his frustration out the object nearest to him: the soft flesh of his older brother. My firstborn started crying, my youngest kept shrieking, and I desperately tried to calm the scene and comfort both children. I soon became completely overwhelmed, and all I could do was press my face against the soft hair of my oldest son and sob. I cried for his hurt, I cried for my own fears, and I cried because it broke my heart to see my youngest baby get so upset. Yet, as disturbing as it was for me, I knew it must be even more terrifying for him to feel so overwhelmed.

So there we stood, immobilized in the middle of the checkout lane; a screaming, crying spectacle…

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Want to know what happened next? To read the rest of the story you can visit the original post, Autism, Meltdowns, and the Unexpected Kindness of Strangers in a Supermarket  at the Parents.com Special-Needs Now blog. Thank you to Parents Magazine for allowing me the opportunity to share!

(Image is via Shutterstock and was posted on the original article.) 

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Celebrate what makes you unique! It’s Not Boring. Seriously.

When Pretty Dresses Lead to Ugly Actions: The Lilly for Target debacle

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Four months ago it was announced that Lilly Pulitzer would be releasing a product line at Target, and the Internets went wild over the news. Apparently flowered sundresses are a Big Deal.

Today at 8am when Target stores opened it was the PEOPLE that went wild. They displayed selfishness and savagery in horrifying fashion.

Word quickly spread on the Internet again, but this time it wasn’t positive. Tales were told of pushing, shoving, hoarding and cursing. Headlines said things like, “Shoppers stampede for Lilly Pulitzer at Target.” Typical comments on Twitter were:

@abigailnoelleee: If you bought items just to resell online for your own personal profit I basically hate you.

@KnoxvillePains: I sincerely believe there should have been a police presence at the #LillyforTarget opening day. I have seen terrible things.

@tomandlorenzo: .@TargetStyle needs to stop humiliating its costumers and plan these collaborations a little better.  

My kind friend Eleonora Link just happened to be there shopping for other items and was appalled at what she witnessed. She wrote about it on Facebook this morning and I share with her permission:

“I have never seen such rude, obnoxious, selfish people. Seriously… what have we become when we accept this behavior of grabbing, and I mean GRABBING, grabbing cute pink/green sundresses!? I felt so sorry for a mother and daughter I witnessed in the middle of this who missed out. The girl appeared about 9 and was almost in tears early into the sale and already disappointed she did not get anything. She commented to her Mom how rude a lady was who tore a garment right of the girl’s hand with no apologies… just sick!”

Eleonora continued, “What are we teaching our kids about appropriate behavior when we witness ADULTS behave so greedy and show such selfish, rude, outrageous behavior!!!”

It’s a SUNDRESS, people.

The individuals that my friend saw act so selfishly had loaded their carts FULL of items, and then bragged how they had collected 5-10 different sizes and intended to sell them all on eBay. While I admit that is selfish, they have the right just like any of us to purchase those items and even to try and make money. But just because they have the right doesn’t make it right! What makes me most upset is HOW they got those items into their cart… pushing, cursing, and even snatching an item out of the hands of a 9-year-old girl. COME ON! And then gloating over their “accomplishment” and how much money they are going to make.

A totally separate issue is how Target failed to enforce appropriate crowd control measures. Tales are being told of employees enforcing a “one item per style per customer” with some shoppers, but not with others who were allowed to literally clear the entire contents of racks and shelves. There should have been clear boundaries set in place and announced before the sale began, and then enforced both in the aisle and checkout line. Target seemed completely unprepared for this. Maybe they just underestimated people’s greed and selfishness.

This type of behavior is nothing new. Greed is a theme that plays out across the centuries. Yet it never ceases to amaze and sadden me when people place the value of things and personal gain above the value of their fellow human beings.

SHAME on you, human people. For SHAME. Today I am embarrassed to be one of you.

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When A Writer Is Blocked

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On Monday I have my very first deadline for my very first article for the Special-needs blog at parents.com. I also have performance anxiety. And Pinkeye, but that is a whole other thing.

I intended to have this article written several weeks earlier. I even started it a month ago. But then I had a sick kid, sick ME, the start of Autism Acceptance month, sick kid again, class parties (I was a sucker and volunteered to be room mom), Easter, Spring Break, sick kid again again, loss of a loved one and subsequent arrangements and gatherings, sick ME again (with pinkeye that I caught taking the sick kid to the doctor)… and on and on. You get the drift. Basically, LIFE.

When I woke up today I was EXHAUSTED. It was the very first day in three weeks that I felt like I could sit and catch my breath. Except that I have a pile of laundry, a sink full of dirty dishes, and a house in otherwise total disarray. And then I realized that if I want to get any feedback from the editor, before my article is due on Monday, I have to finish it today so she can read it before she goes home for the weekend.

I really want her feedback because I feel an immense amount of self-imposed pressure to write the Best. Article. EVERRRR.

I was thrilled when I was offered the opportunity to have an occasional featured post on the Parents website. It was exactly what I had hoped for and had been working towards. Then about an hour later I was absolutely terrified. Terrified that I wouldn’t be good enough, and that people might laugh at me because there are other writers out there that are better than me. I worried I would make grammatical mistakes and look foolish. Most of all, I was afraid that I wouldn’t be able to think of anything to write, or that the words I did write wouldn’t be worth reading.

Why do we punish ourselves so much with self-doubt? And why is it, even when we have an opportunity in front of us that we find incredibly exciting, we are so willing to let all the other mess of life get in the way of accomplishing our goals?

Oh, and why is it that I have been inspired to write SEVERAL posts this week that are thoughtful and compelling (if I do say so myself), but still can’t finish the one I most want to do???

ENOUGH, I say. I’m going to go grab another cup of coffee and then I’m going to write.

I am going to finish that article. I am also going to have to trust that, even though it will NOT be the “best article ever,” somehow it WILL make the world a better place.

My words matter, because they come from my heart.

Wish me luck!

(Image is of a coffee cup, pen, and paper. All are shrouded in shadow. Just like my thoughts.)

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