Why I Didn’t Cry When My Daughter Was Diagnosed With Autism

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I remember the details pretty vividly of when the therapist told my husband and me that our daughter was on the spectrum. It was morning. The office was dark. The couch was uncomfortable in that it was too deep to sit back on and still have my feet on the floor. The therapist held a clipboard like it was armor. I’m sure now she probably had to deal with a lot of defensive, incredulous parents before us.

This therapist had spent three hour-long sessions with Ruby prior to today. Observing her. Questioning her. Trying to relate to her. Ruby was 4 years old. Ruby walked on her toes and flapped her arms. Ruby rarely made eye-contact. Ruby was not interested in changing from one game to another until the first game was completely exhausted. Ruby talked in long run-on sentences that never had an end or seemingly a point. Ruby played solo and not with any preschool mate. Ruby hilariously used her name in third person.

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Ruby also learned the characters of the alphabet before she was 15 months old. She memorized most all Dr. Seuss books by the time she was 2. She memorized song lyrics after hearing them once. She showed an amazing amount of patience and tenacity with challenging crafts. She spoke like someone who lived many lives before and like she was born a 16-year-old. She loved to author her own stories and songs into recorders and would spend hours doing it if allowed.

When the therapist said “Ruby has PDD-NOS or Asberger syndrome. She’s on the autism spectrum,” both my husband and I sat in silence. I remember the therapist going into some long explanations of how she arrived at the diagnosis along with some advice as to what we should do next and then asking us for questions. I remember thinking, “I wish I could think of a question.” It was so quiet for so long.

What was said next though is the moment that truly stands out for me. The therapist remarked that I was not crying or otherwise emotional (which if you know me is actually something quite odd) and that maybe we did not understand what she was saying. I slowly answered her. I said to her that she was telling us nothing that we didn’t already know. We knew our daughter and we knew that something about her was different from her brothers, from other kids her age. We were there because we knew “it”–we just wanted to know if “it” was something we should be worried about.

And then I felt stupid. I always knew Ruby was different. I always knew she was exceptional. Why were we there to be worried? Why were we handing any kind of power to shape Ruby’s thoughts about herself to relative strangers? It was like God came out of the clouds like he does in Monty Python and the Holy Grail and said to me, “Knock it off. Of course you being the guardian of this child is a good idea! Get on with it!”

That day, I handled myself with as much maturity and grace as I have ever in my lifetime. I don’t know where it came from (or where it’s since gone) but I thank the God in the clouds it was there. I wish I had had it in the months before we went and had the presence of mind to lose myself to Ruby’s quirks rather than wondering if they were “normal.” I would tell myself if I could go back, “You got this.”

In the years and therapies that have followed the diagnosis, Ruby is now 11 years old. Ruby makes eye-contact. Ruby rarely flaps her arms anymore. Ruby walks on her toes but not always. Ruby talks endlessly about fairies and computer programs and Kelly Clarkson lyrics.

Ruby still insists on finishing what she is doing, but will take a break to eat dinner. Ruby has written and published a book of her poetry. Ruby acts in plays. Ruby has a best friend. Ruby no longer uses her name in third person. She doesn’t need to remind me who she is anymore.

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The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Why This Little Interaction With My Son Means So Much to Me

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When I heard Dominic running down the stairs and into the family room at 6:30 a.m. this morning, my first thought was, what in the world is he going to do with the two hours before his bus arrives? Would he play with his toys? The i-Pad? Rest on the couch? When I asked Dominic what today was, he told me, “riding a bus to get to Kinawa (his middle school), pizza!” Yep, every Thursday I let him get hot lunch, which always includes pizza.  If Dominic had his way, every day would be pizza day.

Next up for him was breakfast. I told him I would be making homemade waffles and would let him know when they were ready. When his “order” was up, he came dancing into the kitchen to get them. He then remarked, “Grandma lives in heaven.” Well, yesterday was the four year anniversary of when my mother-in-law passed away.  It was tough not to grab a tissue and dab my eyes. Next, Dominic said, “Lauren?” I told him that she wasn’t here. He then said, “Lauren is at college!” Yep, she went back to start her second semester this past Sunday. Dominic then told me, “Miss Mary on Saturday!” Miss Mary is his private speech therapist that we started seeing during the summer of last year and we continue to see her on Saturday mornings. I told him, “thanks for reminding me, I need to write that down on the calendar!”

There was a time in the not so distant past, when we would have to guess what he was thinking and wonder if we would ever be able to carry on a conversation with him.

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There was no guessing this morning as to what Dominic was thinking, that’s for sure– he let me know all about it! I can’t wait for him to come from school this afternoon and tell me all about his day. I’m sure at the top of the list will be how much he enjoyed his pizza at lunch!

This post originally appeared on Bountiful Plate.

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Why I Can’t Imagine Who My Son Would Be Without Autism

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What exactly is autism, anyway? He doesn’t look like there is anything wrong with him. Should we get a second opinion? What if he’s just going through a phase? I’m sure he’ll catch up to the other kids soon. Some kids just talk late. He’s just quirky. I have thought and said all of these things.

Sometimes it feels like it was just yesterday that my son was diagnosed with autism. Other times it’s hard to imagine life before he was diagnosed. Joseph Campbell said, “We must be willing to let go of the life we planned so as to have the life that is waiting for us.” I was so focused on getting Brandon the help he needed that it took me some time to realize that it was OK to grieve. 

Grieving over the life I had pictured for my child doesn’t mean that I’m admitting that something is “wrong” with him. It doesn’t mean that I love him any less, or that our lives are over. Pretending that everything is OK, though, is walking a fine line next to denial.

If I could go back to the day my son was diagnosed with autism, I would tell myself that there will come a point when I could not imagine my child any differently. Don’t misunderstand me–I’m not saying I would wish autism upon anyone. There are varying degrees of severity, and I do wish that my son did not have to deal with the struggles that autism brings. However, if someone handed me a pill that would cure my son’s autism, I would not be quick to snatch it up. I can’t tell you with any certainty that I wouldn’t do it; I’m just saying that it would give me pause.

Even at his young age of 3, he has such a personality. Regardless of the “autism is/is not a disease” debate, there is no doubt that autism is a part of my son. If I were to take that away, would he still by my little Brandon? Would his interests change? Would he still like to play the same games? Would he still have his fearlessness? Would he still laugh at the same things?

It’s not possible to decipher all of his quirks between autism and his God-given personality. 



Yes, autism is a part of who my son is, but it does not define him.  He is just a boy.  He is my boy; and the truth is, I could not imagine him any differently.

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This post originally appeared on Ramblings of a Special Mom.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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How a Dog Helped This Boy With Autism Finally Say the Words His Mother Needed to Hear

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Oliver Smith, a 6-year-old boy with autism, had never said the words “I love you.” Then, he met Lucy.

Lucy is the Smith family’s “buddy dog,” and she is there to help Oliver because, in addition to autism, Oliver lives with epilepsy, cerebral palsy and visual impairment, BBC News reported. Lucy and Oliver bonded at once and have been inseparable ever since.

He opened up to us through her,” Sarah Smith, Oliver’s mother, told the outlet. “He’d never said ‘I love you’ before, but he said it to Lucy after meeting her for 30 seconds. Then after the first month, I phoned him one night, I was away with work, and he said, ‘I’ve got something to tell you mommy. I love you.'”

See Lucy and Oliver together in the video below: 

 

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When a Little Boy Asked What My Picture Cards Are For

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“What are those?” I hear a little voice ask me.

I am sitting in a waiting room. “Those” are mini visual cue cards I use daily at work with kids who have differing abilities. I explain they’re cards that give instructions with pictures instead of words.

“Are the kids learning to read and is that why you need the cards?”

I explain that the kids have differing abilities and are learning and pictures help.

“What are differing abilities?”

I’m still amazed at how willing kids are to learn about the meaning of differing abilities. We just have to make it a priority to teach them. I told him that while people come in all shapes, colors, abilities and sizes, and while we may look, sound or do things differently, inside we’re all very much the same.

I always use myself as the first example. I point to my glasses. I cannot see without them. Everything is fuzzy. I tell him I need assistance to see. I rely on tools like glasses. Some kids I work with have helping tools also. Canes, wheelchairs, walkers, story cards, assistance dogs and other medical assistive devices. I see him taking this all in. He goes on to say he hopes they’ll learn but “I am glad you got those cards and I am glad you got those kids.”

He knows that school let out at 2:30 and it’s 3:15. He asks why I still have the cards on display. I explain that I want to be able to communicate with any kids, and if I happen to be out of school, now I can. I also like when people ask about the cards. It opens a door so I can talk about working with a great group of kids. This little boy smiles and says “cool.” He says he wants to get a set of cards like I have so he can communicate with anyone. I tell him he can always communicate with anyone without words or cards.

Then I feel like the Good Witch Glenda from “The Wizard of Oz” as I tell him he already has the power to do so within him. I lean over and say, “You look a person in the eye, give your biggest smile and wave hello.”

He looks at me in the eye and smiles. And so do I.

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What I Wish the Old Me Knew About Autism

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If I could go back to the day my son was diagnosed with autism spectrum disorder, I would have told myself to invest in Clorox stocks. Haha! One of his stims leaves everything quite messy. But, in all seriousness, I would tell myself, “This is going to hurt. Just accept your beautiful children and get them some therapy outside of school for troublesome issues. It gets easier. Hang on.”

We were stuck in a small town. My then-husband worked at a small rural telephone company. I’d heard of autism; I’d volunteered as a teacher’s aide in the special ed classroom in my high school in 1992. And what I knew of it was terrifying. One young man in my class scooted everywhere. He was capable of walking, but the teachers wouldn’t dare set him off by insisting he do anything he didn’t want to do. I remember my first day watching him and his interactions with those around him. I was told, “Don’t look him in the eye or he’ll attack you!” And I thought to myself, “What is he, a lion? A Rottweiler? There has to be something better than this self-contained building with teachers doing little more than babysitting for these kids.” I’m so glad about how far education systems have come since then, but there’s still a long way to go for many.

Now, I was the one with a child with autism. And I struggled — not because I wanted perfection, but because I wanted understanding. How did it happen? How do I help him do better? What will happen to his baby sister in regards to him? I read everything the Internet and library had to offer on the subject. I spent hours I could have been playing with my kids, trying to find a “cure.”

I went to my doctor for help for myself as I plunged into a deep pit of hopeless depression. He told me, and I quote, “Well just expect that he’ll never love you, and he’ll most likely end up in an institution.” That didn’t help. Thankfully, I already knew the first part was a lie.

I eventually got both of my kids in with the area’s leading doctors. They told me to start with a gluten free/Casein free diet. But they didn’t tell me how to go about this, and I totally botched it. To this day my son doesn’t trust anything I cook. He went from not eating for a week at a time, to only eating white/beige foods that were bought at a fast food restaurant. I’m still trying to regain his trust.

But what I’ve learned along the way has been most important to me.  I’ve learned to appreciate differences. I’ve become way less shallow and self-righteous. My faith has been built up exponentially. My sense of humor has become a little bit off, but I love it. I’ve learned to rejoice in all victories, big and small — they’re really worth it. I’ve learned that one common thread can stitch together an entire tapestry of people from different backgrounds, incomes and beliefs and meld us all into a beautiful masterpiece.

Much love to you all in the beginning dregs of this journey. May you have the faith to see it through, and the sense to enjoy the little surprises along the way.

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The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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