How I Learned to Always Trust My Instincts When It Comes to My Child

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When the school psychologist kindly explained that my three year old daughter rated mild to moderate on the autism scale, I wasn’t even surprised. I went into my daughter’s evaluations pretty much knowing that something was going on with her. Still, I would be lying if I said I didn’t have a moment where I felt a bit weepy, even though I expected this diagnosis. In that moment, I mourned a loss of something that I never had to begin with– a made up version of childhood perfectionism. Then we brushed ourselves off, and life was exactly the same as it was before the word autism was even uttered by her.

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The truth is that I always knew that there was something a little different about my daughter. The first time I saw her, she was sticking her tongue out at the world. On the first day of her life, her grandfather stopped what he was doing, looked up at the ceiling, and asked her, “ What are you looking at?” In case you’re wondering, she was looking at the fluorescent lights on the ceiling.

Sleep was something she simply couldn’t master. She had almost no capacity to self regulate. She was the most serious infant I’d ever seen in my life. She didn’t smile until she was over 6 months old. She never crawled, walked early, and pretty much immediately afterward would spend hours jumping up and down while flapping her arms. She lined things up all over the house, on any open space she could find. She ignored people– she had no use for them at all. She would run away from us if we didn’t hold her hand. If you foolishly released her hand, she’d run as far away and as quickly as she could.

You would think that since I immediately recognized these behaviors, that diagnosis was both immediate and easy. It wasn’t at all. The problem was other people, who I’m sure had good intentions, worked very hard at making me doubt myself. Ranging from poo-pooing her behavior, to down right anger and hostility. I had numerous people telling me that these things were normal. These were people in my personal life, with some of them actually being healthcare professionals. Bitter arguments would ensue where I would explain that every time I plugged in something online about my child, that Dr. Google’s first entry was autism. Each time. Every time.

It was the same even with people who were not a part of my personal life. Her pediatrician, who I still like a great deal, didn’t catch it. When I brought up her very poor sleeping habits, I was told that she was “on the extreme side of normal.” When I brought up her constant running and jumping up and down, I was told that she probably had ADHD, but that there was nothing that could be done for her at such a young age.

The truth was that she hit her developmental milestones. Could she say two or three word sentences? Absolutely. It just wasn’t productive language. She would just repeat the same sentences over and over again. She couldn’t even answer a yes or no question. Could she make eye contact? Sure, she could make eye contact. It was just fleeting, intermittent eye contact. Sometimes, someone would be talking to her, and she wouldn’t even turn her head to look at them. But yes, she could make eye contact if she wanted.

This ladies and gentlemen, is how a child “falls through the cracks.” This is how children who can “pass” don’t get the services they need. Autism is almost like a dirty word to many, and people have a preconceived notion of how someone with autism should act. In asking people if they could tell something was “off” with my child, the response would commonly be yes, followed by an immediate: “But I don’t think it’s autism.”

I don’t fault people for that response. It’s what society has conditioned us to think. For all I know, if it hadn’t been my child, maybe my response would have been the same.

If I had it to do all over again, I’d trust myself a little bit more. I would have pushed a little harder. I wouldn’t have allowed doubt to creep into what I obviously saw with my own eyes. I’m fortunate because even though there was a slight delay, my child will be getting services at the end of the month. She is 3-years-old. Still fairly early, but I could have got her in at least a year ago if I had just stopped arguing, and just started doing.

Parents, always trust your instincts. No one knows your baby better than you.

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 [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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I Don’t Know Whether My Son Has Autism or Not, But These Are the Things I Do Know About Him

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I see a lot of stories on here about autism spectrum disorder. I get it, I do. I know that if you have a child who is diagnosed you want to share their triumphs and tears and it helps to know you’re not alone.

But I have a feeling I am alone. So many people talk about their 2, 3 and 4-year-olds having autism. My son will be 4 next week. I don’t know what he is. I know he has a speech delay. I know his fine and gross motor skills are excellent. I know his vocabulary is about 100 words, maximum. I know he swats at his sister when she snatches his toy and runs off with it. I know my son smiles, and laughs, cries and likes plastic animals.

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What I don’t know is whether he has autism. I’ve thought about seeing a doctor, a specialist or someone in the school district to find out. I’ve discussed it at length with my husband, my mother, my sister, my friends. I’ve looked up information online, I’ve bought books, I’ve had one-on-one conversations with parents of children with autism.

I want my son to be 4. I don’t want him to be labeled, and boxed, and to have every tiny movement be defined by a word or a diagnosis. I don’t want to excuse his behavior or rejoice in it because we found out what makes Nolan just Nolan. Especially not this young.

A diagnosis will be with him for the rest of his life; there is no rush for us to get a piece of paper with a word someone needs to hear to explain him. He gets services because of his delay. More services than he needs– we scaled back his speech therapy because it wasn’t working and forcing a 3-year-old to spend upwards of 6 hours a day on “academics” is ridiculous. He needs to be able to be a child. He needs to be able to find his voice, even if he’s not using words. He needs to know that mom and dad will let him find his own way without a pigeon-holed existence.

It has its challenges. When people meet Nolan, and he acts more like he’s 2 than 4, they’re confused. I say: he has a developmental delay, so he doesn’t talk much. They don’t get it. They stare at me, or stare at him, and wonder why he isn’t like every other 4-year-old they’ve met. Its tricky, and its heartbreaking at times. But I know that simply defining Nolan for other people isn’t what’s best of him or us.

I’m proud of my son. I’m even proud of his impairments, because it shows he’s thinking, he’s evolving, he’s finding ways to adapt in the world around him. I applaud all of you for your work with, and love for, your children. Let’s step back for a moment sometimes and not let a diagnosis define them, but let them do that for themselves.

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A Note to My Past Self: There Will Be Good Days

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If I could go back to my son’s diagnosis, the first one when I was 20 weeks pregnant with him, I would tell myself, “Yes, Xavier will have Hydrocephalus (excess water in his brain), but this will not be all of him. You will have bad days, horrible days, days when you have to trust a surgeon to help him.”

“Then you will have great days. Days when it seems like nothing is wrong with him and days when you have to explain what Hydrocephalus is to people. You will realize that there was so much strength hidden inside of you that God needed a way to show you. You will know complete unconditional love. You will be able to stand with nurses and doctors during rounds and be 100% confident that they will listen to you, his mom. You will know that your path in life will be one that you never realized before.”

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Flash forward to when Xavier was 2 years old and we were at his NICU follow up clinic appointment. The doctor told my mom and me that Xavier has dysontic spastic quadriplegic cerebral palsy. If I could go back to this diagnosis, I would tell myself again, “Yes, Xavier has this, but it will never define who he is as a person. This will be another hurdle that he will have to go over, but he was born into the right family. You will have an amazing team of medical doctors and therapists and a family that will never leave your side. This is not your fault, nothing you did caused this; it just happened. You will give him so much love and life that he won’t notice his disability as much. You will know terms, equipment and medications like the back of your hand and you will handle it all with such grace and strength. You will be cheering at 0.5 oz weight gain because for months you have been documenting his food intake. You will cheer when he rolls over on his own and you know it was on purpose and you will cheer when hear his first words. Just because he has this doesn’t mean his life is over. His life is just beginning and it will be amazing.”

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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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I Used to Hate the Beach. Then, My Daughter Came Along and Changed Everything.

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I used to hate the beach. I loathed the bright, hot sun that makes my eyes malfunction and my pale skin burn brighter than the reddest lobster after three minutes of exposure. I couldn’t stand the smell of the sea, a smell that can only be described as ten-day-old seaweed covered in iodine and set on fire in my nostrils. I was never comfortable with the fact that no matter how careful I was, I was always a magnet for small packets of sand that found their way into my car and laundry for days to come.

Then, I became my daughter’s father.

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A truly great parent puts their child’s needs above there own. I try my best, but I’m not always great. Fortunately, any deficiencies I have, I am able to compensate for in the the fact that I basically married Mary Poppins. I love to watch her be a mother. I learn so much. She’s so good at it. One of the greatest choices I ever made in my life was to track her down on MySpace after lacking the courage to ask her out in person.

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My daughter has to endure many physical challenges in her life. She has to spend a lot of time with doctors at hospitals. She can walk short distances wearing her braces and having someone’s hand to hold. We know she’s going to need help in her life to accomplish some day-to-day physical activities. She rarely likes to make eye contact. She also currently does not speak. With all of this, it can be challenging to know what she likes, what she hates, when she’s hungry, and when she’s sad and needs comfort.

We find answers to a number of these questions through trial and error. We try different things with her to see what she likes. We bring her different places to see what she enjoy. We’ve learned she likes the duck pond by our house. She likes her preschool and her teachers. She likes the waiting area for Turtle Talk at Disney’s California Adventure. She even likes going to see her physical therapist. None of these things compare to the beach.

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She loves the bright sun and the way it feels on her skin. She adores the feel of the breeze on her face. She finds the waves hypnotic as she watches them come and go. She takes joy in slowly moving her hands through the sand. She breathes in the ocean air the same way I breathe in the smell of freshly made chococlate chip cookies. She looks at everything. She enjoys the beach so much that I made a photo book of our trips that we look through at bedtime. It brings a smile and peace to her face that could end all wars.

The first time we sat together in very shallow surf and she felt a small wave touch her her skin, I heard a laugh so pure and full of happiness I became hooked. I became a fan of the beach. We now have a whole routine. We begin our trip to the beach by asking our daughter at home if she’d like to go yell, “come, come waves!” When we make our way down the highway, I love to watch her smile grow in the rear view mirror as she realizes that we are getting closer to her heaven. My smile grows even more when I hear how much she vocalizes when we park in that parking lot right by the sand.

I become overcome with pride as I hold her hand and we walk down to the waves. Every time she takes more and more steps. I’ll close my eyes with her as we feel the wind on our faces. I watch her watch everything and am amazed by how much she’s noticing. I laugh when the day is too cold and she still grabs my hand to get me to take her in the water. I even smile when she cries when she knows it’s time to go home because I know she loves being there more than anything. I don’t know if I can put into words how much it means to me to know that my daughter loves the beach that much. The beach gets to be our heaven away from doctors and hospitals. It’s made me love the beach. I love that sun, and the smell, and even that freaking sand that takes me weeks to clean out of my car.

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I am my daughter’s father and I love the beach.

This post originally appeared on Medium

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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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