Melissa's daughter

The 3 Words That Put My Daughter's Diagnosis in Perspective

We never knew where Zoey fell on the autism spectrum. We had a second opinion today with a different pediatric neurologist who has just as many diplomas and degrees on his wall as the first neurologist we saw in August.

Where does she sit on the spectrum? That has always been my question and no one could answer me… until today!

Zoey has classic severe nonverbal autism.

I was praised for getting her diagnosed so early and was told she is getting more than most 2-year-olds as far as therapy goes, with great therapists. I’m doing everything I can do! I’m doing it right!

Then why does it hurt so bad? I went in there and said, “Yes, I know she has autism.” I never doubted that. I wanted to know where she was… because she can’t tell me where she is… she screams out of frustration and tries so hard to communicate and help us to help her, but it’s painful! Painful for us to watch her scream out of frustration because she wants to eat or drink but the words don’t come out and she can’t point to what she wants, so she goes to the kitchen and screams.

Yeah, I wanted to hear something different today… I wanted to hear, “I think it’s an inner ear issue that could be contributing to her lack of speech.” The answer was no to that!

I watched as she turned the lights off and on in the exam room, and when we moved the chairs, I watched as she moved them right back so that she could keep doing it. I then watched as I said, “All done,” and she screamed at the top of her lungs and then threw herself and had a meltdown in the room.

I finished with the neurologist and we said goodbye while she listened to Michael Buble’s “Lost” on my phone to get her to calm down. We walked out with the neurologist saying, “She has great taste in music!”

She held my phone as I got her into her car seat. I gave her the “blankie” and not long after she was asleep.

I called my husband and told him about our visit and he said, “It changes nothing.” That is the same exact thing he said to me with her initial diagnosis in August. As I cried into the phone, he knew why I was crying. I don’t care about the autism; I wanted to hear something else, something that went like, “Yeah, let’s check her inner ear to see if there is an issue contributing to the lack of speech.”

Why did I want to hear that? Watching your child throw herself on the ground because she can’t tell you she’s hungry or thirsty, or that her ears hurt her or she needs something. She can’t point or ask… she screams! Watching her scratch and dig at her mouth out of frustration, because her mouth can’t say what is in her head, what she wants or needs. I wanted someone to say, “We can help her with her frustration!” It is excruciating and heartbreaking. You see, I can accept autism, but the frustration that autism brings is not fair! I wish things could be easier for her.

She slept in the back as I cried in the front because I can’t take away that frustration.

I cried and tears were all down my face. I waited in line at the McDonald’s drive-thru to get her chicken nuggets, which I knew she was just going to eat around the crunchy batter and throw the chicken on the floor. As I waited, I remembered my husband and what he said…

“It changes nothing.”

She’s our child.

She has classic autism.

We love her.

I still wish I could ease her frustration.

Follow this journey on Melissa’s Facebook page.


napkin at party with colorful text saying 'you're invited'

Why This Birthday Invitation Matters

Autism first touched my life when my younger brother, Jack, was born in 1998. He was diagnosed at age 2; my parents were suspicious that something was different about him different because he wouldn’t make eye contact or respond to his name. When he was diagnosed, my family’s life changed, and we were put on a whole new path. Every day we learned something new, whether it was that Jack didn’t like certain foods or that noises would make him cry. Or learning that he had to bathe in his favourite pyjamas because he couldn’t understand he would be able to put them on again after.

As I was growing up with Jack, I was always accepting of his disability; it was completely normal, and it never worried me. We never went to the same school (there was no special education programs where I went) so he went to a school which was able to help him learn. At school I loved being with friends, playing and always enjoying myself, but my brother never got to have this experience. It was something always in the back of my mind. When we’d play at home, just sitting together moving around our toys or running around the house, it was just the two of us. We could never speak or communicate with each other like other siblings, but we understood each other in our own way. He was not only my special brother but my best friend.

young girl hugging her brother and sitting with blankets and stuffed animals

Whenever I was invited to a friend’s house or a party, it was hard for me because my brother was never invited, but my other friends’ siblings always would be. I understood the circumstances, but I never understood why they didn’t include Jack, and it would tear me apart inside.

But I will never forget the day my brother was invited to a birthday party. I was 9 years old, and I got a invitation to my friend’s birthday party. I hurried to open it, it read “To Courtney and Jack.” I smiled so much and was so grateful I couldn’t wait to get home and tell Mom. I jumped in the car and said “Mom, you’ll never guess who was invited to my friend’s birthday party with me!” Mom kept asking who and thinking it was one of my friends. She looked at me in the rearview mirror as I said, “Jack did, Mom! Jack gets to come to the party.” To this day, my mom says it was one of the happiest days she can remember.

To me, this was a milestone, someone actually saw my brother as a person — a person who matters, someone who counts. People may not know much about autism. But we all needed to learn, to be aware and share experiences, to help and support the people in our community. My brother will always be my best friend; and, to this day, I will never forget the first moment my best friend was included and noticed.

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mother carrying her son on her back

If You Love Someone With Autism, You Love a Snowflake

“Normal is boring” is a something I have been saying for years. I never want my kids to fit into a mold someone else feels they should be in. I want them to think outside the box and to strive for progress, not perfection.

loving someone with autism is loving a snowflake

April 2nd is World Autism Day!

We chose snowflakes to symbolize our children for Autism Awareness 2015 because of a short educational clip “The Science of Snowflakes” by Joe Hanson, author of the “It’s Okay to be Smart” blog.

Snowflakes are:

“Symmetrical, but they are not perfect. They’re ordered but created in disorder. Every random branch retells their history, that singular journey that they took to get here, and most of all that they are fleeting and temporary. Even if sometimes they may not look so unique on the outside, if we look within, we can see that they’re truly unique on the inside.”

We are all human; we are all imperfect. Even if some people don’t look unique on the outside, if we look within, we can see that we are truly unique on the inside.

This is the snowflake that I love, my Beast.

young boy on mother's back

Do you see his eyes?

Because he sees you. I mean, really sees you, his eyes understand you, feel you and observe you in a way that is like no other.

I wish I could tell you all he sees or how he processes what he sees. I can’t, though, because he can’t tell me. Well, at least not yet…

My beautiful Beast is nonverbal, but he does talk to me using ASL and PECS; we have deep conversations with body language and intuition.

The hardest thing to do once you have an ASD diagnosis is to accept.

You have to learn to accept that the label doesn’t change who your child is; he is still the child you loved unconditionally before his diagnosis. He is still the child who loves you for always being there for him, even if he can’t tell you himself. A simple hand on your cheek or a moment of eye contact that sends chills up your spine because you know exactly how he feels about you, with no words spoken.

All your child’s dreams might not become a reality. You will have to mourn the loss of the child you once thought you would have. Not because they can’t do it, but because you know there are larger challenges in front of you.

The milestones that you celebrate are not the same ones your friends are going to be celebrating with their children and will be ones that they just don’t understand.

You are their voice. You might need a team to help you, but you are their most important advocate! Your child needs you, more than anything, to fight for them. You will become a warrior of good to spread the word about autism, to show the world that they are not less because of their diagnosis.

Your child is a snowflake; they see this world differently (sometimes scary), but they also see the smallest details that would be lost on us.

Things will be hard…

My Beast, beautiful Beast, is the snowflake that I love.

He is the piece of the puzzle that would have been missing in my heart had he not been born.

He doesn’t call me Mom. He doesn’t tell me he loves me. He does speak louder than words.

He is more than his diagnosis. He is smart. He is beautiful. He is amazingly intuitive. He may not speak, but he communicates effectively and understands context.

Most of all, he shows me every day he is strong, and that he loves me with all he is. Autism is a part of him and because of it, he will teach me some of the most important lessons I need to learn in life.

young boy on mother's back

This post originally appeared on Finder Seekers.

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How to Tell Your Kids That They Have Autism

When our children are diagnosed as being on the autism spectrum, we go through so many different emotions, such as relief as we realize we were right and think that they may now get more help. We will later discover how hard we have to fight for it! We know our children are quirky and willful, and we believe they are perfect.

But how do our children feel? How do you tell your own child that he or she is on the spectrum?

Your child knows he is unique. He knows that he sees things differently than other children. He may have been bullied over being a stickler for the rules or for being so obviously different from his peers by exhibiting verbal or physical stimming.

I believe that the best way to tell your child is to sit him down when he’s relaxed and happy. Here’s what I suggest:

Explain that when he went to see the doctor that day and the doctor had a talk with Mommy afterwards that it was to tell you that you have a child whose brain works differently. It works like a computer, deleting some useless data but downloading what interests them.

Make autism sound like what it is: a neurological difference that might make some things a little harder. He may have to find different routes to the same destination their neurotypical peers have reached, but chances are his way will be unique and extremely well-thought-out.

There are brilliant books available, including “Different Like Me: My Book of Autism Heroes” by Jennifer Elder and “My Autism Book: A Child’s Guide to Their Autism Spectrum Diagnosis” by Glòria Dura-Vila and Tamar Levi.

My son knows he has autism. We told him as soon as he was diagnosed.

He’s very proud of his autism.

I just asked him, “What’s the best part of having autism?” He said, “Myself!”

I hope he will always be so proud. He certainly knows how to cater for his sensory needs and will go to the sensory play cupboard for play materials for tactile feedback and visual stimulation because he knows he needs that to calm him. He will get his weighted blanket if he feels the need to be grounded, and he will go for some time in the bedroom if he needs to detune.

Let your children express themselves and follow their lead. They will amaze you, and watching them grow with confidence in themselves is the greatest gift you can be given as a parent.

Educate them on great storytellers like Lewis Carroll, whose character Alice searched to make sense of her world. Let them marvel at the art of Michelangelo and Andy Warhol, and listen in wonder to Mozart: all amazing minds at work who might have had autism. People with autism can do great things; show them that.

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Why I Stand Quietly Beside My Daughter

I stand quietly while you do somersaults on the bed as you aren’t being naughty, you are just trying to get your out-of-sync body under control.

I stand quietly by the toilet door every time you need to go, and come with you around the house, and sometimes even just across the room, because I know you can feel truly frightened when you are not near me.

I stand quietly at the supermarket checkout while everyone stares at you barking like a dog and blowing raspberries on my arms to cope with the buzzing lights.

I stand quietly while you tell the baffled shop owner that you are looking for shoes that feel hard like splintered wood because your skin can’t bear soft things.

I stand quietly when the attendant gives us scornful looks when I ask for the key to the disabled toilet because the hand dryer noise is too overwhelming for you.

I stand quietly while the nice old lady who lives over the street tells me you wouldn’t be like this if you had siblings.

I stand quietly watching the part-cooked dinner flush down the toilet as the smell was becoming too strong for you to bear.

I stand quietly as you diligently brush your teeth even though it feels like the toothpaste is burning you.

I sit quietly while you scream at me, trying to control the panic you feel because I gently touched your head when brushing your hair.

I sit quietly while the teacher tells me she knows about autism and that you are not autistic and asks if I would benefit from some parenting classes.

I sit quietly while the GP, the occupational therapist and the pediatrician agree how bad it is, but say that there are no resources to support us further.

I sit quietly while you cry because your friends say you can’t play with them any more because you tried to change the rules once too often, even though it was only so you could cope.

I sit quietly watching you desperately try on countless items of clothing, searching your cupboards, feeling the textures, knowing that we will have to cancel your beloved horse-riding lesson again because they all feel too bad to wear.

I sit quietly as you explain to me that you can go to no more birthday parties and no more clubs because people are just too scary when they are excited.

I sit quietly when my family tell me that you will grow out of it, that you just need more routine and earlier bed times.

I sit quietly and rack my brains for something for you to eat as everything you try today makes you gag and wretch until your eyes stream with tears.

I sit quietly when an old friend suggests I would be better off putting you on the naughty step and taking away a beloved toy.

I sit quietly all night while you sleep on the cold wooden floor with your head on my leg as you are really poorly but the warm softness of the bed that should be a comfort is making you feel worse.

I sit quietly while you try to regain some kind of control over your body in a meltdown, scared and sobbing and writhing about, hitting yourself harder and harder and begging me to hit you as hard as I can too.

I lie quietly with my back to you as my smell makes you feel sick and although we both desperately want and need to cuddle, you can’t bear to.

I lie quietly beside you when you tell me that you are the wrong sort of special and the wrong sort of different and you want to die.

I have had to learn to do these things quietly because my daughter needs me to. She is 7; she’s bright, super funny, articulate, thoughtful and loving. She also has autism spectrum disorder.

If you saw her on a good day, you’d maybe think she was a little shy and kooky. You’d maybe wonder why I am letting her wear flip-flops in the winter rain. You’ll never see her on a bad day as she can’t leave the house.

She has severe sensory processing difficulties. A normal day exhausts her and when she feels overwhelmed, even a gentle voice trying to soothe her with loving words can be too much to process, making her feel crazy. She describes walking into a room of people as “like staring at the sun.” She’s incredibly empathetic but you may not realize it, as she feels her own and others’ emotions so deeply she can’t bear it, and so sometimes she has to just shut down. Forget about a hug. She is also desperately trying to come to terms with having a hidden disability that few people can understand.

This is just one story among thousands of different stories of autism. Not everyone is like Rain Man or like my daughter. I know it’s no great piece of prose, but it’s from the heart. Thanks for reading, and I would appreciate it if you could please share to help autism awareness.

If you could donate something – however small – to help people with autism, well, that would be amazing – thank you:

A longer version of this post originally appeared on Dirty, Naked and Happy.

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Lead photo source: Thinkstock Images

6 Words That Shattered Every Excuse I Made for My Son’s Behavior

“I think he might be autistic.”

It took me six months to utter those words.

I used to say… “Yeah, he isn’t sitting up yet, but I don’t think he’s autistic.” “He’s 18 months and finally walking, he was just used to be carried around. He’s not autistic.” “Sure, he’s transfixed by the way that tree moves, but he makes eye contact, so I’m not worried that he’s autistic.”

Beth Tackaberry's son

“He really likes to line things up, but there’s no way he’s autistic.” “He’s 2 but has yet to utter his first word, but he makes sounds and seems to have his own language, so I don’t think he’s autistic.” “He’s a boy, after all, they are late developers. Besides, his big sister must talk for him.” (She didn’t.)

“He’s 3 and talks now. Well, he echoes what we say. At least he’s talking, right?” “He is super cuddly with us. There’s no way he could be autistic.” “He doesn’t engage in play with other kids, but that’s just his age. He loves to play on his own. Besides, he loves to chase his sister. He’s not autistic.”

“He spends an hour running his hands across the ridges of the vacuum cleaner hose. He would prefer lining up letters and numbers over playing with trucks. He hates his hands being dirty. He flaps his hands. He moves and hums and circles the island 100 times (counting each turn). He can’t be autistic…”

“I think he might be autistic.”

I said it to my mom. Finally, after all that time trying to push it to the back of my mind. And we both cried as she said, “I think he might be, too.”

And he is. It took six more months to get the diagnosis.

My beautiful, blond-haired, blue-eyed boy is autistic. And I couldn’t think of anything more wonderful. I don’t know why I was so afraid to utter those words.

He loves animals. And letters. And numbers. He loves his friend M at preschool. And his teachers, too. He loves Play-Doh. And “Blue’s Clues.” And Great Wolf Lodge.

He loves hugs. And his sister. And mommy and daddy. He loves walking in the forest. He loves dance parties in the living room.

His world just looks different to him – and it’s a wonderful world.

He’s my son and is wonderful. Oh, and he also is autistic. And I’m so blessed to be able to navigate his world with him.

Beth Tackaberry and her son

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