When I Didn't Feel Welcome in an Autism Support Facebook Group

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For us, diagnosis was not a surprise. We’d long asked our pediatricians about autism. From the earliest moments, it was obvious our son was different than other babies we’d been around. We thought a lot of the differences could be attributed to his cleft lip and palate, the fact that his mom and dad are both a bit quirky and that he was an only child at that point. By the time he was 3, I was certain that he was on the spectrum, but he was already receiving speech and occupational therapy for food aversions and his cleft lip and palate. We wouldn’t have added any other services, so I was comfortable with forging along without diagnosis. I had lots of online information regarding sensory processing disorder and found much help and comfort in learning.

Preschool came and went, and he did well. But by kindergarten, I knew we had to do something else. In October 2011, I spoke with the school psychologist for the first time and asked for a formal assessment. In December, we received our formal diagnosis. I’ll never forget. We took the boy out of his martial arts class, explaining to the teacher that we were going to take some time to focus on therapies again but that we hoped at a later time we’d be back. That’s when I got my first apology for our diagnosis. I was no stranger to apologies; after all, our son was also born with a birth difference. But this one hit me in the gut.

I took to the Internet and finally joined Facebook. I expected to find community. Belonging. Moms welcoming me with open arms and warm hearts. On January 5, 2012, this is what I blogged:

I don’t quite know what I expected when we received the Asperger diagnosis. Perhaps, community? Understanding? Peace? I don’t know. It’s hard to feel part of a community when there is so much division and anger. One group says, you aren’t autistic enough to be here, you don’t know our struggles. No I don’t. But, you don’t know our struggles, either. I mean this on the human level. How many of us know what it is like to walk in another’s shoes? None. Yes, my son is verbal. Yes, my son is gifted. But, you don’t see his ulcers from the anxiety he holds inside. You don’t see him when he has spent his day struggling to contain stims. You don’t see him when he’s sad because he feels as if he has no friends. As humans, we all want love and understanding. Because I speak of Asperger syndrome, it doesn’t mean I don’t want care for the autism spectrum at large. I do. I speak of what I know. Just as someone who writes about breast cancer doesn’t seek to diminish leukemia. We’re all doing our best to navigate this world and form community. Perhaps, I look in the wrong places. Perhaps community is closer than message boards, websites and blogs. Perhaps, I need to forge a community of my own.

Do you see that last sentence? “Perhaps, I need to forge a community of my own…” That’s exactly what I did by creating a closed Facebook group, which I still have. It’s full of the most amazing, supportive, phenomenal women I’ve never known. We laugh at ourselves, whine, complain, cheer for each other and our children. It’s the single best autism related-thing I’ve ever done for myself. The second step, was starting the public Facebook page, AutismInOurHouse. I started by sharing my blog, which forced me to write in a new way, a more in-depth perspective. By doing this, I’ve gained more insight into my thoughts. The more I write about my feelings, the more I think about them and am able to sort and work through them.

If I could go back to diagnosis day, I’d tell myself, “Do exactly what you are feeling the need to do. Find your people.” No matter the diagnosis one receives, no one understands like the people who are walking the same path. Even the same path has different pebbles and stones for each walker, but nothing replaces knowing that the person you’re talking to — even via private message on Facebook — “gets it.” Nothing. Go. Find your people.

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This post originally appeared on Autism in Our House.

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Someone Asked My Son With Autism Why Eye Contact Is Hard. This Was His Answer.

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I received this question, through my own blog for my son, who has autism. His name is Philip.

Hi Philip,

My sister, who has a son with autism, just told me about your page. I’m a big admirer of what you’re doing.

I am trying to learn everything I can about what life is like for my nephew so I can interact with him better. As I’m only just discovering your page, I’m not sure if you’ve covered this topic before: Why is it so difficult to make eye contact with people? For me, it was always hard to communicate with my nephew because I used to think he wasn’t paying attention since he was looking away or stimming, which made it seem like it was impossible for him to hear what I was saying. I know better now but would love to find out more about what it’s like. Thank you for opening up your world to us – you are an inspiration!

I had Philip write back. He said:

I am letting you know about eye contact. My eyes see very well. Most people seem to need to have to look long and hard to make sense of a picture. I can take in a whole picture at a glance. Each day I see too many little petty details. I look away to not get overwhelmed by a lot of little bits of information. I watch things that a teacher or person I listen to tells me to watch. This helps me concentrate on what I should be focusing on. I can search for a teacher’s voice to try to focus on. I am academically learning best when I sit side-by-side with a teacher. A seat on the side keeps me focused on your voice and not on visual distractions. I am assessing many sounds too. I have to erase some stimuli to access my answers to people’s questions and meet their demands. That is why I don’t make eye contact. I am always listening. I listen a lot to voices. I so love when people talk to me and are not talking like I am not there. I am active because I am unable to feel my body well. People think I am being rude but I can’t help it. I need to move to feel my body, but sitting down at least helps me not walk away from you. Please peacefully talk to your nephew. Let him know you understand. I am sad when people think I don’t like them. I love people.

Love,

Philip

philip reyes

This post originally appeared on Faith, Hope and Love… With Autism.

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What I Want You to Learn From My Broken Marriage

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Autism gets a bad rap with families and marriages. I’m sure you hear it all the time. The pulling apart. The stress, the constant worrying, the lack of time with your spouse and other children.  The focus becomes your affected child, and there’s no time for you or your partner.

I thought my marriage was strong. It wasn’t strong enough. My spouse and I did what many parents do: gave everything we had. Every spare waking moment was directed at the children. We were tired. Timothy, my child with autism, had a long and aggressive period we couldn’t seem to come back from.

I cried — and often. Timothy focused a lot of his aggression on me for some reason, and it beat me down — far down into a deep pit of despair. I couldn’t take him anywhere without a second adult. He destroyed our home, his anger apparent on our living room walls. My partner couldn’t understand why I cried. It hurt. I didn’t feel supported — although looking back, maybe he was supporting me in his own way.

We drifted apart slowly, not even noticing at first. As usual, the children were priority. But this is what you should learn from me:

Who was there before your children? Your partner.

Who is your backbone? Your partner.

Who will be there when your children grow up and leave the nest? Your partner.

There’s no handbook on parenting or managing a marriage and special needs. You sort of have to fumble through it, messy as it can be, and figure it out on your own.

If I can give you anything from this to take away, I want to encourage anyone reading to make time for your partner. You — moms and dads of children with special needs — are as important as your kid. I’m serious. Make time for each other. Love each other. Often. Even if it’s only a few minutes a day or a monthly date night. Learn from my mistakes.

As for me, I’ve learned so much these past few months on this roller coaster called love and marriage and special needs. I call this coaster, “One day at a time.”

This post originally appeared on The Book of Timothy.

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Why I Used To Cringe at the Word 'Autistic' and Why I Don't Anymore

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10708576_10152799234684282_771262623762835093_o I used to cringe at the word “autistic.”

I hated that word.

I had a blog draft started called, “Why I Cringe at the Word ‘Autistic.’” I asked my family to stop saying it by politely and lovingly telling them it was putting a label on my son. It was defining him, and he’s so much more than just an autistic kid.

My feelings on the word “autistic” are hard to articulate. The word sounds so severe to me. It boiled down to this, though: Autism is not something my son is. Autism something my son has.

Of course, it’s just one little word and it’s not meant in a negative way. But when something is so close to you, such a big part of your life, impacts your child —  the child who you’re incredibly protective of — a simple word can stir up emotions.

Here’s where this changed for me.

I was reading a blog post about using word “retarded” to refer to a mistake or something you don’t like. The comments below the post steered in different directions. “Is autistic” vs. “has autism popped up. Someone who actually has autism offered her opinion, which completely peaked my interest. Who better to listen to about autism awareness than someone who actually has autism. Here’s what she said:

“I am autistic though. Not a person ‘with’ autism. Autism is not a personality quirk that I carry around with me, it’s a part of who I am.” 

Now, imagine if someone without autism said this:

“People are autistic though. They’re not people ‘with’ autism. Autism is not a personality quirk that they carry around with them, it’s a part of who they are.”

These statements make different impacts. Hearing someone who actually has autism say it made all the difference for me. I have my own struggles, but the bigger picture is about my son. One day, when he’s able to put his thoughts into words, I’ve got to ensure that I truly listen to what he has to say and not get caught up in my own emotions and ideas about what he wants. After reading her comment and reflecting on it, I’ve come to the seemingly obviously realization that I will forever ask for my child’s opinion.

I’ve said before that I can’t imagine my son without autism, yet I was so hung up on the word “autistic.” That’s not what I’m truly hung up on though. I’m scared. I’m afraid Brandon’s peers won’t understand him. I’m afraid when his teachers talk about him they’ll say, “You know, Brandon… the autistic one.” The thing that keeps me up at night is that Brandon’s feelings will be hurt because some adult lacks compassion and understanding or an innocent child just doesn’t understand.

After reading this woman’s comment, I’ve changed my perspective. Being open and willing to change one’s thoughts when warranted is so important in this special needs world. Brandon is autistic. As I’ve said before, that doesn’t define him, but it is a part of who he is. I’ve known this all along.

This post originally appeared on Ramblings of a Special Mom.

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The Question I Should Really Be Asking About Autism

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When the time came for me to have children, there were a lot of options and situations that I knew I needed to be prepared for. I have to admit — a majority of my thoughts were about choosing nursery bedding and baby names. Would I use cloth diapers or regular ones? What stroller should I get? It had never occurred to me that I needed to prepare myself to raise a real-life superhero.

young boy in superhero costume

When I see my son, I don’t just see a child with autism who needs help to be part of the world. I see a superhero who can teach me and others far more about the world than I could ever teach him. I see the most amazing, dedicated, triumphant child who has a unique skill set unlike any other. I see a boy with the truest, honest, kindest heart that I’ve ever seen. I see a boy with great passion for life. He’s a person with a special connection to extraordinary individuals and a trusting heart that doesn’t judge. I see so many magnificent qualities in him.

But the reality is, it’s not all cake and rainbows.

The hardest part about raising a superhero is watching the battles they encounter daily.  There’s no way to truly document how that feels, as a mother, because it’s indescribable. However, watching your child discover the world in a way that most people could never imagine is the indescribable counterbalance to it all.

Everyone has their own philosophy on how to raise a child on the spectrum, and I respect that. For me, the question often isn’t about how to raise a child with autism. It’s how can I help foster his inner superhero? How can I help him  build upon the wonderful foundation he already has, and how can I help further develop the person that he is? It’s hard as an autism parent mostly because there’s a fine line between trying to help faciliate the kind of growth that will better prepare him for this world and how and when to let him soar and just be him. I think many parents of children on the spectrum struggle trying to find exactly where that line is in a life full of therapists and interventions.

You spend every day trying to live in what feels like the same world as your child. You spend countless hours lovingly trying to bring him/her into your world and stay there. A world that brings your child extreme discomfort and pain. To even make my first real connection with my son, I had to enter his world, and I think that should really count for something. I may be uncomfortable with his world because — just like my world is to him — it brings me extreme discomfort. But he loves his world, and I feel that has to count for a lot when deciding where that fine line is. To be honest, I don’t think we really live in different worlds; we just see and feel things differently.

As a parent of a child with autism you need to go outside your comfort zone and think more about when to help foster the inner superhero inside of them. You see, according to the dictionary, a superhero is a fictional hero, but I don’t agree. When I see my son, what he can do and how he perceives and combats the world on a daily basis, it’s clear to me that superheroes are indeed real. There’s nothing fictitious about them, and I couldn’t be prouder to be raising one.

This blog is dedicated to all the real-life superheroes and extraordinary children out there. May we all feel the blessings of your presence and the amazing qualities that you possess and bring to our world. Thank you for all that you do.

This post originally appeared on My Extraordinary Child.

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How I Got Over My 'I Don't Want Him Labeled' Mindset

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“I don’t want them labeled.”

If I had a dollar for every time I heard this, I could pay off my house, your house and probably have enough left for a nice new car. Honey, it’s time we had some real talk.

I keep hearing this. Hell, I’ve even said it myself. But, this isn’t about you. It never was. It hasn’t been about you since the moment the doctor said, “It’s a boy! Or girl!” Sorry, sunshine, I’m all for a pity party for one from time to time. But this resisting a label thing? That’s not helping your kid at all.

I’m not going to beat around the bush with this. Your kid (and mine) already has a label. The weird one. The troublemaker. The quirky one. The “What’s with that kid?” one. Why not get them the correct one? More important, get them the correct supports in place for success.

I believe the label is a necessary evil. I know being practical is about as much fun as watching paint dry, but it is what it is. Think you’ll get an insurance company to pay up for some sort of nondescript help? I can’t even get them to pay past 30 sessions of speech therapy, and my kid has an autism label. Plus, I get the added bonus of having my yearly conversation: “Why yes, I will still be taking him to speech therapy and paying out of pocket. He’s still very much autistic. He didn’t magically recover from his severe expressive and receptive communication troubles just because we hit the limit. Go figure!”

And school? You’re definitely going to need a label there. No one is handing out IEP’s all willy nilly for kicks. You want that free and appropriate education the law entitles your child, you have to get the label. You just do. You want to get the best possible tailor-made education for your kid, you best accept that label that so terrifies you.

I get it. I really do. I was in denial for years. I didn’t want to see what was right in front of my face. Once I started accepting it, well, I got used to it. It’s not a case of getting better. You just start finding your kid’s own groove. I started following the tour guide that autism sent to me. Yes, there are frequent stops for french fries and I know more about trains than I ever thought possible. I started to get a bit more fluent in his own language while teaching him my own. I saw past the label.

In other words, I got the eff over myself. Everyone just wants what’s best for their kid.

This post originally appeared on Autism With a Side of Fries.

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