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What I've Learned About Autism Since My Diagnosis

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The Lesson I Learned When Our Family Opted Out of Holiday Parties

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Holidays used to be a challenge for our special needs family. My wife and I have two boys, Peter and Daniel, aged 17 and 15. Dan is autistic and nonverbal. Years ago, my wife and I made the decision to no longer go from home to home trying to see everyone for the holidays. What is often meant to be a fun and relaxing tradition with relatives was stressful for our son and a challenge to plan. For the weeks leading up to the holidays, we would have discussions, checklists, plans, backup plans and worry all the way to the party.

So instead, we opted out. We decided we were going to stay at home and have Dan in his most comfortable environment instead of going to another’s home. This decision would help alleviate many of the challenges we faced as a family. As for our other family members, we decided if we were not going to go to their home, we would instead have a “Holiday Open House” and invite everyone to come to our home. We called them and said something like, “If you can make it, great. If not, no biggie. No pressure.” When we did this, something amazing happened. Everyone came to us. As I look back on the last 10-plus years of my life, I found I have consistently underestimated the amount of support available to us.

This year will be our 10th year of hosting the holidays. I am so grateful for our loving and understanding family. They support us, love Dan immeasurably and don’t judge our methods. What was a family decision to help our son years ago is now our family tradition. At our party, Dan often hangs in his room, comes down periodically to see who is here and check on the festivities. And as the years have gone on, he has gotten more into it, coming down more frequently and hanging out with the guests. The difference today is that when he has had enough, he goes to his room for some quiet or to be more in control. During the party, family filter in and out of his room to see him, play with him, or just to get some one-on-one Dan time.

Some of the great things my wife does to make this a fun day include a (heated) trivia contest, a “guessing jar” of candy where the attendees guess the number of pieces, and the wildest “White Elephant” exchange in history. All contests have small fun gifts, and I am always as surprised as others to see what they are. As for me, I make it my goal to provide a huge holiday meal and channel my inner chef.

In looking back, this decision has helped us be more aware of the opportunities and support we have. At times, it can be easy to get overwhelmed and think we alone must solve every challenge in our child’s life. This experience and many others have taught me that when we let go of how things “should be” and realize we don’t have to do it alone, the possibility of something better always presents itself. Funny enough, what was once a stressful decision for my wife and I has ended up being one of the greatest Christmas gifts I ever received: a change in perspective.

My hope for the readers of this article is if you have a child with special needs in your family, that this year you receive the same gift I did.

Image via Contributor.

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Costco to Host Quiet Shopping Event for Those on the Autism Spectrum

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When My Son on the Autism Spectrum Told Me He Didn't Want to Be 'Special'

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I’ll never forget the day my son came to me and said he didn’t want to be “special,” he just wanted to be “normal.” I was so blindsided by it I didn’t know how to respond at first. I asked him to elaborate on it, and he told me everyone’s response to him not being able to do something because of his autism spectrum disorder was to tell him he was special, and he hated it. He didn’t want to be “special” if it meant having a hard time doing things others could do more easily. He would much rather be “normal” and be able to do the things everybody else could do.

I took a moment to take this in and consider how to respond to it. I knew whatever I said could have a lasting impact on him, and I was terrified of saying the wrong thing. I began by telling him I understood his frustration. It was a fact that he faced certain challenges because of his autism, but he also excelled at certain things. I told him everyone was special in some way, because everyone was unique. No one person was like another person. We are all different. We are all good at some things and not so good at other things. I gave him examples of the things he was good at and I wasn’t good at, and the things I was good at and he wasn’t good at. This piqued his interest and got him so excited he decided to make a list of things others he knew were good at and weren’t good at, and I knew he was going to be OK.

The days that followed had him going around asking people what they were good at and what they weren’t good at. By the end of it, he had a notebook full of profiles of people we knew, and I had found out more about them in a couple of days than I had in years!

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Taking Pride in My Autism

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As a child, and well into my 20s, I’d become “overexcited,” spinning in circles on the hardwood living room floor in front of my parents, flapping my hands with excitement, dancing in circles, sliding side-to-side. I’d scream and cry when certain sounds came on the TV, and have meltdowns when my shoes didn’t feel right or I had to wear certain materials. Someone actually took a picture of one of my meltdowns over ill-fitting shoes.

My autism wasn’t acknowledged throughout my life, until just recently. My mother was once told I was autistic by doctors, but she chose not to believe it and said to me, “You’re artistic, Charlie.” That was one of my many nicknames.

I still have these moments, but now I don’t feel ashamed of them. I no longer believe I must act “normal” or neurotypical. I’m much better when it comes to clothing now, but that’s mainly because I can choose my own. A nose tic I’ve had all of my life is no longer a mystery, as many people with autism can have tics. Everything has fallen into place due to a couple of observant professionals. I can’t be thankful enough.

I take pride in stimming, especially at home or in the car (a place where I need extra calm). I’ve made my own sensory toys and bought some as well.

Though my autism diagnosis wasn’t acknowledged in my younger years, I was in special education. It was the right kind of education for me. I thrived there. Not everyone learns the same. I process slowly, and at the new alternative school, I didn’t have to listen to lectures. I basically got to choose my own courses, and they were mostly dealing with abnormal psychology.

I have lived my life acknowledging I was probably an “Aspie” on and off, until one day a sociologist said, “You’re autistic, aren’t you?” I was blown away.

My point is, special is amazing. If you are a parent with an autistic child, I hope you realize that. If you are autistic, I also hope you realize that.

Follow this journey on Perpetually Autistic.

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The Fears — and Hopes — I Experience as the Parent of a Child on the Autism Spectrum

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I’m scared. There I said it. I’m the mother of a 5-year-old boy, Mason, who has autism spectrum disorder. Mason is beautiful and wonderful in so many ways. I try to come off strong and spend every day of my life fighting for him. But every day on the inside, fear eats me alive.

“But you seem so strong,” everyone says. But my fear is also strong. From the moment I wake up until when I go to bed, the thoughts run across my mind.

Will he speak today? He’s been pretty quiet the last few days. Is he mad at me because sometimes I don’t know what he is trying to say? Does it feel like he’s trapped inside his own head and he’s screaming to get out? Will we ever have a full conversation?

What is he doing at school right now? I wish I knew what was going on. Is he having a good day? Is anyone being mean to him? Is he happy? Is he being treated well on the bus? Is he smiling as he sits in his seat on the ride home?

Is his health OK? From what I can see it is. We’ve had a lot of tests done — is there anything I’m missing? Does his body feel OK? Is he healthy?

Will he ever fall in love? Will he ever be in a romantic relationship? What kind of friendships will he have in his life?

Where will he be in 10 years? Will he be OK living with us? Or will he be independent?

What happens when my husband and I pass on? Who will take care of him then? Who will know how to take care of Mason the way we do? Will he be scared? What will life be like for him when we are gone?

Fear. Those are the fears. Every. Single. Day. Those fears are strong.

“But you seem so strong,” they say. In my experience, there is one thing that is stronger than those thoughts. And that is hope.

For me, hope goes a little something like this.

Sure, he didn’t speak much the last few days, but did you see the way he was focusing on my mouth when I was talking today? And the way he used pictures to talk to me today? He is really starting to get the idea of communication, the social exchange. With time, and therapy, we will be able to communicate more. I won’t give up. I’m hopeful.

When he gets off that school bus and he looks at me and smiles, I really do see the happiness in his eyes after he comes home from learning in an environment that’s suited to him. And I’m hopeful there will be more good days for him ahead, and he will continue to grow and progress. We see the change in him.

I see him run around the house and outside in the yard, smiling and laughing, playing with his toys and his brother. Sure, he has his health issues, from non-convulsive epileptic activity in his brain to sinus issues, but we’ve done every test and explored every avenue we could when it comes to his health. And things are getting better! I am thankful for his health, and I am hopeful that whatever future problems arise, we will be able tackle them the way we have with these ones.

As for love — I see love in his eyes every day. His love for me and his dad, his little brother, extended family members. His love for friends and neighbors and therapists. I see it. I don’t know what the future will bring in terms of relationships, but I have hope. I have hope because I see the love in his heart.

I don’t know where he’ll be in 10 years or even one year in terms of independence. But you know what? In the past year, he’s made incredible progress in dressing himself, brushing his teeth, and taking care of his own needs. I am so proud of him! If he can do all of this now, imagine where he will be next year. And the next!

And who will take care of him when we pass? I can’t think like that right now. I can tell you that the progress I’ve seen in my child over the last few years has been nothing short of amazing. I hope that he will grow to accomplish things beyond our wildest dreams! But who will be around to catch him if he falls if I’m not? I don’t know the answer to that, but I can tell you that he has an amazing support network of people in his life — family, friends, teachers, therapists — and that he is really and truly loved. He has this way of touching people’s lives with his smile and his heart. And I am hopeful these people will continue to be there for him and his network will continue to expand and grow, so he will never be alone.

Leaving the fears of 2016 behind, I am reminded of a quote I read a while back saying, “Hope and fear both require you to believe in something you cannot see. You choose.”

There’s a new year coming. Mason has made progress, and he gives it his all every day. So for you, my boy, in 2017 I’m choosing hope. My hopes are stronger than my fears for you, and my love for you is stronger than anything in this world. I’ll be with you every step of the way!

Images via Contributor.

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