When Someone Suggests Your Child Has Autism

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It’s been suggested to you — maybe by a well-meaning neighbor, teacher or family friend — that your child may have autism.

You don’t know anything about autism. You can remember seeing “Rain Man” once. You can remember seeing a documentary with a person with autism. Your child is not like that.

No, your friend or neighbor or teacher is definitely mistaken, you decide, shaking your head.

Curiosity gets the better of you, and you hit up Google. What you see simultaneously devastates and elates you. This is your child they’re taking about! Everything fits. The lining up thing he does?

Autism.

The way he likes to go up to every single front door and touch it twice on the way to school? The difficulty expressing himself and the desperate need for routine? Knowing every single car sign there is? Autism.

You’re referred to the educational psychologist. You go to your doctor and ask for a referral to your local child developmental center and sit in the waiting room while your son lines up cars on the floor. You go in with a long list of traits and anxiously watch as the pediatrician attempts to get your child to stack little colored wooden blocks in a certain pattern. Your child does the first two, then gets frustrated and sends them scattering onto the floor. He screams in anger.

The doctor recommends a hearing a test, and you go, knowing full well the results will be negative. They are.

That child can hear a cookie packet being opened two rooms away; you knew there was nothing wrong there.

You go online and buy every book there is. You look into every therapy and wonder if you’re doing enough. Too much? You discover sensory play and have a great time playing with pasta, rice and corn flour for tactile feedback and visual stimulation –terms you hadn’t really heard before now enrich your child’s days.

The day you’ve been waited over a year for has come. You knew they would say your son has autism, that he has autism spectrum disorder, to be precise. 

You walk out feeling relief yet numbness, a sense of triumph towards anyone who said you were wrong and were worrying about nothing.

The next morning you wake up with a sense of wonderment inside, you look at your child and the sentence, “He’s autistic, my son has autism,” runs repeatedly through your head, perforating every thought.

The next few days it’s easier.

You realize you’re still adjusting, and your child hasn’t changed. He’s still the same adorable little boy, grinning with his walking shoes in hand, waiting to take you on a journey of acceptance and enlightenment.

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My Son Is Not ‘Damaged Goods’

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A couple years after my son, TJ, was diagnosed with autism, I wanted to give back to the people who had helped me so much to get through the difficult time of diagnosis. So I became a support parent through a local organization. As a support parent, I was matched up with a newly diagnosed family. I spoke with them on the phone about all these new terms being thrown at them, what the different therapies entailed and our successes and struggles.

I loved it. It wasn’t always easy, and although I sometimes felt exhausted by my own family’s journey, I thought it was important to help someone else dealing with the same thing.

Finally I was given a family in my own town to support. Our kids went to the same school. I saw the mom every day at school pick up. It was so nice to be able to casually chat in person about what we both were dealing with as we learned more and more about autism.

This mom who I supported had a new baby — a beautiful little girl. When she finally brought her baby to the school for pick up, I said to the mom that her baby looked exactly like her big brother. He was a beautiful boy with autism who was doing so, so well.

This mom looked directly at me and said, “Don’t say that. He’s damaged goods.”

My stomach dropped. I felt sick. I suddenly found it difficult to stand next to this woman.

So I went to the bench and sat down, trying to digest what I’d just heard.

There was no indication that this woman had been having a particularly bad day or that her son was, either.  We’d been chatting. We’d been smiling. We’d been laughing.

All that ended when I said her baby resembled her big brother.

And then I felt the heat of a strong anger I’d never felt before. If she thinks her son is “damaged goods,” then she thinks my son with autism is too.

And that could not be further from the truth.

My son and hers are both perfect the way they are. We’re helping them understand how society works around them and how they can grow up to be contributing members.

They’re not burdens, and they’re not damaged goods. Never have been, never will be.

I called our local organization and told them I was not going to be a support parent for this family anymore.  Maybe I gave up where I could have made a difference, but I couldn’t bring myself to talk to this woman again.

I think we’re from different planets. Because when I look at her son and mine, I see beautiful smiles and potential for a happy, fulfilling life.

I see no damage. None at all.

Eventually as time went on, I stopped being a support parent all together. I wanted to devote all my energy and efforts into my own family and our daily happenings.

I often wonder if I should have stuck it out with this family — that maybe I could have helped the situation somehow. But I also realized this wasn’t my job. My job was to take care of my own family.

And so I have. And I’ve loved every day of it. Even the tough days. Because none of these kiddos are damaged or need to be fixed. They just need to be taught in a way they can learn. This is different for everyone, autism or not.

These kids of ours are a treasure and a gift. And there is no place in my world for anyone who thinks otherwise.

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5 Life Lessons I’ve Learned From My Daughter’s Rare Disease

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Dear Mitochondrial Disease,

When you came into my life eight years ago, I started preparing to go to war.

I wanted you out of my daughter’s body, and I was willing to give up everything to do it. I went to the specialist, walked away from my career, relocated to another state and cut those who were too weak for battle out of my life. I gave it my all, but you are still winning. Today I know I will not win this war, but I will learn. You have become my teacher. I get new lessons every day, but these are some of the things you have taught me.

1. Live life to the fullest. This is a lesson that I already knew, but like most people, I forgot it once we settle down in the suburbs. Our days became full of scheduled activities for the family. We gave up our sense of adventure and the willingness to take risks. How did I get from being the girl who went skinny-dipping in a Costa Rican rainforest to the mom with a color-coded calendar?

You came along shook my world and made me realize life is short and we have to make good memories together. One day you will leave me with a heartache that nothing will heal, until than, we are going to make memories that you cannot steal.

2. Love without expecting anything in return. I tell my daughter I love her and she cannot say those words back to me. I will have to care for her for the rest of her life, without ever hearing her say “Thank you.” Yet I love every minute of being with her, and it’s an honor to take care of her. I have learned to love without any conditions, and I care for her without any expectations.

3. Be independent. I had to become physically strong when I realized I couldn’t depend on anyone else to lift and carry my daughter for me. I am her caregiver and I must stay strong because you have taken away my daughter’s strength.

Thinking about the strength she has lost gives me the drive I need to continue getting stronger. Knowing she may never walk keeps pushing the two of us to run faster. Oh, you thought you took away her ability to run? Look in her room, and you will see all her race bibs. My legs, her wheels and our team have made her into a strong runner.

4. Be present. Caring for Rebecca requires me to stay in the present. There is no cure, and I don’t know if she will be here past the present moment. This is a skill that has carried over to other areas of my life. When I am eating, I enjoy every bite. When someone is talking to me, I listen to every word. When I am outdoors, I notice the details in nature. When I hug, I put warm thoughts and love into the hug. When I am with you, I am with you.

5. Be flexible. Getting stronger emotionally and physically requires learning to be flexible. When I am at the breaking point, I tell myself to bend so I don’t break. Yoga has become my time to bend physically. Prayer has become my time to surrender spiritually. Through yoga and prayer I have learned to become comfortable with the uncertainty of having to live with you.

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I cannot see you as a blessing, but I can see you as a lesson.

For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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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Dear Illnesses, You Made Me Into a Different Person. Thank You for That.

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Dear Myalgic Encephalomyelitis and Fibromyalgia,

I was a normal 15-year-old when I first met you. I wanted to be a vet, I hated school apart from my art lessons, I wanted to stay out late with my friends and I enjoyed being onstage. You turned all those joys upside down and took them away.

I went from being bright and bubbly to exhausted and withdrawn. I went from being clever to unable to read a book. I went from walking miles to being unable to stand. I went from being a social butterfly to seeing all my friends drift away. I lost all the parts of my life that made me who I was, and it was all because of you.

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Despite these things, I’m not angry with you. Why? Because you have made me a stronger person. I know what it is to suffer, so I now appreciate the smallest things in life. I have more compassion toward others who are suffering, and I have made new friends who truly love me for who I am. I have reinvented myself and built a new person from the rubble of my old life. That person is better than I ever could have imagined.

I will always struggle with life, and I may never be as independent as I once had hoped. But life is still worth living, and I thank you for helping me realize that.

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For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? 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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The Unlikely Tool That Ended My Special Needs, Potty-Training Nightmare

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Warning — This post involves poop talk. I think others may be in the same boat that we were, so I felt it was my duty to share this post with the hope it brings sanity (and cleanliness) back to your decorated-in-crap (literally) house.

We’ve had our issues potty training our daughter Lily, who has a dual diagnosis of Down syndrome and autism.

Confession time — potty training, or lack thereof, is probably the most disliked part of parenting for me.

Two of my kids were fairly easy to train, at least in comparison to their siblings. Dasha, who’s adopted, arrived potty trained (thank you God!). The rest, well, suffice it to say they were low achievers in the art of using a toilet.

Autism, Down syndrome and other special needs can affect the way a child feels about bodily functions. They either go hog wild and embrace, touch, play, throw, smear — you get the idea — with what we find offensive, or you have the ones who are oblivious to it and wouldn’t care if they lived in diapers, Pull-ups or underwear the rest of their lives just as long as someone else dealt with the mess.

They really just don’t give a crap. We, the parents or the caretakers, go off the deep end trying to break the disgusting cycle while also doing the dirty work.

Lily has been “pee-trained” for a while now. It took a Fisher Price musical potty for it to click in her mind what peeing was all about. She needed to figure out the connection between the sensation of a full bladder and needing to go to the potty. The problem was she really didn’t care and it took months with a lot of stern voices and then elated cheering to see any results. Candy, cookies, stickers or other incentives didn’t work with Lily.

Once she became pee-trained, she then started using her nighttime “Goodnites” as her poop diaper. We couldn’t get her to achieve a bowel movement in the toilet, so she had no concrete visual experience to use as a reference for a long time. Until, surprise! One day, she did it.

I’m pretty sure I announced it on Facebook and most likely everyone within a mile radius heard my shout of joy that first time it happened. Sadly, afterwards it was hit or miss on using the toilet since she still favored using her “Goodnite” diaper at night for poop time.

We also started having poop accidents, or “Shitastrophes,” as we’ve been known to call them. These started when she got her spica cast off two years ago after dislocating her hip and needing major surgery. It’s like everything she’d learned about bathroom etiquette (which wasn’t much) before being stuck in that full body cast and bedridden for four freaking months was completely forgotten and we were back to square one.

It was awful. To help you understand a little better, I should mention that Lily doesn’t call us for anything. Ever. I’ve never heard her say, “Mommy come here,” or “Mommy help me,” so obviously, she would never call us to say, “Yoo-hoo, I’ve pooped!”

There were multiple incidents of butt-scooting down the carpeted stairs in a leaking diaper full of poo. An even better version was her going poo on the potty and then butt-scooting down the stairs, leaving a skid mark the length of our staircase, to share the good news of her going “poopy potty” with a big smile on her face.

Sometimes, we’d find her sitting on one of our leather couches bare-cheeked, playing on her iPad and oblivious to the stench and nastiness penetrating our furniture. Other times, she’d poop on the potty, get off without wiping and walk in her room to put on a new pair of undies without a word. She’d then go through four or five pairs of undies because they kept getting dirty. She’s also famous for dropping her drawers, going poop on the potty and climbing back in bed sans panties. She’ll then wait until I find her with poo streaks on her sheets and say, “Poopy?” with a grin the size of Texas.

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To say I handled these “Shitastrophes” with grace, serenity and calm would be a big fat lie. Lily now holds her ears when one of these events happens because I guess I’ve been a bit loud while facing an enormous cleanup. We’ve actually replaced her bedroom and the upstairs hall’s carpeting with hardwoods to ease the cleanup.

Then came my salvation.

The “Poopy Button” (that’s what we’re calling it) was suggested by one of our developmental teachers who comes to our house to work with three of our kids on academics. I was ranting about another incident regarding poop and one of them said I should get one of those wireless door bells and put the chime down on the first floor and the button next the toilet. I thought it sounded kinda crazy and doubted Lily would understand what we wanted her to do.

We purchased one reasonably-priced remote doorbell ($15-20?) at Lowe’s or Home Depot (I forget which place) and installed it. Her Print Shop savvy daddy made a cute little sign with a picture of her beloved Barney on it to place next to the Poopy Button. We then showed it to her, demonstrated how it worked and waited for her to poop one night on the toilet. Once she went we rang the doorbell. Even Lily could hear it from where she’s sitting on the potty, and we can hear on the first floor. We praised her for pushing the button and reiterated over and over how we wanted her to push the button every time she went poop.

We were very skeptical that she even understood our expectations.

Well, lo and behold, the next night, I heard the doorbell chime (which is set to a different tone than our front doorbell) and ran upstairs. There was Lily, proud and happy, sitting on the toilet waiting for me. As soon as she saw me she announced “Poopy!”  To say I was ecstatic would surely be an understatement. Since that night she’s used the Poopy Button multiple times.

Our next goal will be mastering wiping, but for now, I won’t gross you out anymore than I’ve already done with this post.

A version of this post originally appeared on Our Version of Normal.

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My Son Isn’t Autistic On Weekends

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He isn’t autistic on weekends.

I realized this some time ago. After the evaluations slowed, along with the mania of online research, endless message boards and reading neurology and abnormal psychology books late into the night until it was late into the morning — he is only autistic Monday through Friday.

On weekdays when we arrive too early or too late for physical therapy, occupational therapy, behavioral therapy and language therapy, he’s autistic.

On weekdays when we stand in long lines at grocery stores where my 5-year-old is wearing footie pajamas, squealing and flapping his arms while other 5-year-olds are wearing backpacks, khakis and tiny velcro tennis shoes, he’s autistic.

On weekdays when we plan, schedule and cancel playdates based on meltdowns, doctors visits, whether the parks are fenced, how many children will come and whether they will be kind to him even if they don’t understand what he’s saying, he’s autistic.

On weekdays when I sit in the lobby of his therapy appointment because I’m waiting on hold to argue another insurance rejection or evaluation and I want a “redo” because this is his life we are talking about, he’s autistic.

On weekdays when I write for his blog, research new terms and stay up too late planning curriculum that people won’t see as curriculum because I spend so much time trying to figure out how to present it so he won’t reject it, he’s autistic.

On weekdays when I tape signs to the front door warning visitors to call first, put stop signs on windows because he might pick up the visual cue or when I remember to pack his monkey halter because I don’t know if there is a bolting risk where we are going, he’s autistic.

But then the week is over, and the mania trickles to a slow drip as I catch my breath.

On weekends when the doors stay closed and the pajamas stay on and there aren’t any expectations except tickling, hugging, singing, pillow fights or whatever looks good in the fridge, he’s not autistic.

On weekends, it’s Tinkerbell or Daniel Tiger on the iPad again and again and again. And maybe this time we will watch it together under the covers.

Because he’s just a little boy.

And because he’s my little boy.

And maybe these moments would be different if he wasn’t autistic, but I don’t really know, do I?

So I sing along when he sings.

And I flap when he flaps.

And I smile when he giggles.

And look in his eyes and see his beauty and marvel that he’s mine.

My boy.

Who isn’t “autistic” on weekends.

He just isn’t.

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 This post originally appeared on Letters from a Spectrum Mom.

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