The Unique Grief of Special Needs Parents

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The day I found out my boy had autism, I wasn’t shocked or upset or wounded.  I was relieved.

I was also in denial.

My boy was smart, and I knew that all too well. He was high-functioning, and I was confident that we would be able to help him overcome any obstacles before starting kindergarten. By the time he started school, no one would even know. They might just think he was a little quirky. Plenty of people are quirky. No big deal.

So I spent that first year with few cares at all, reading a handful of books, learning about social stories and visual schedules and the basics of Asperger’s, convinced that we would be past all of it in a couple of years.

Then kindergarten came, and my world got smashed to pieces.

Things didn’t work. The new school, the new teacher, everything we had prepared for… it broke faster than I could scurry around and pick up the pieces. Less than six weeks into the school year, we requested an ARD meeting and moved him to an autism program at a different school.

We are four years further down the road now. The social differences are much more noticeable at age 9 than they were at 5.

I don’t know what it is like to lose a child. It breaks my heart when it happens, because I’m not sure if or how a parent ever recovers from it. Yet I know brave souls who somehow go on after a child’s death. I can’t imagine what the grief is like.

The Unique Grief of Special Needs Parents

There is a kind of grieving that can exist as well with having a child with special needs. My child is very much alive, and I am so grateful, especially since I have witnessed his seizures and considered the possibility, if just for that split second, that he was dying.

But the hopes and dreams I had for my child change a little more each day as I watch him move forward in life. When he was just 5 or 6, I had hope that he would outgrow certain behaviors with age, that he would function better. It was that hope that kept me going. Yet here we are at age 9, and while some behaviors have improved, others have declined.

Adolescence is just around the corner and it is scary. To accompany the grief, there is its sister – guilt.

Guilt that I did something to cause it.

That I should have noticed the signs sooner, sought a different course or path.

That I should be doing more, reading more, helping more, trying harder.

That I should spend more time, more money, more effort supporting my child.

That I should experiment with a different therapy, a different drug, a different teacher, a different diet.

And whenever I try to give myself a break, cut myself some slack from overworking, overthinking, over-trying — there’s always a judgmental comment or stare to put me back in my place.

Sometimes it brings me to uncontrollable sobbing.

I can’t make the grief or the guilt go away.

My 13-year-old and I got into a shouting match one day about it. “Why don’t you and Dad do anything? Why don’t you make him behave?” he yelled.

With hot tears washing my mascara away, I argued back, “What would you have me do? I’ve tried everything! Please, tell me what to do! Tell me! Is there another book to read? Another therapy? Another anti-psychotic drug? I’d love to hear your suggestions!”

Not my finest parenting moment.

And yet, if there was one thing I’d want other parents to know, it’s to please be aware that we — the moms and dads of kids with special needs — are sometimes hurting.

Yes, we love our kids. No, we wouldn’t trade them for anything in the world. But the love we have doesn’t take our pain away. In fact, it just intensifies it. Because we can’t take their hurt away. We can try and try and try, and we do, and it might even help a little, but we can’t make always make the pain go away.

When you look at us like we are “weird,” when you stare and ogle, when you move your kids away from ours, or worse, never include our child in your child’s activities, it’s like rubbing salt into our already raw wounds.

For my son’s ninth birthday, we sent printed invitations to school. We invited the entire class of children with special needs, as well as the entire class of children without special needs. The invitations indicated that we were serving pizza and that families were welcome. We wanted to make sure people showed up. So we bribed them with free food.

Fortunately, all my son’s friends with special needs came. We have to stick together because kids with special needs don’t always get invited to that many parties.

One boy from the other class came. One.

That’s enough to just break a momma’s heart right in two.

My anxiety directly correlates to my son’s behavior. When he’s doing well, I usually do OK. When he struggles, I get worse. I’m sure it could be defined in some complex mathematical formula. All I know is that when he hurts, I hurt more.

So next time you are at the Chick-fil-A playground, or at a church picnic, or a Cub Scout campout, try looking at those kids and their parents a little differently, please? Try to remember that the parents are desperately in love with their baby.

And by being a friend instead of a judge or a finger-pointer, you might just make somebody’s grieving a little easier.

Editor’s note: This post has been updated since publication to meet our editorial guidelines.

A version of this post originally appeared on “Sheri Dacon – Lyrics for Life.”

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Autism Awareness Is Important, but Here's What Else We Can Do

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During each of my waking moments today — and likely all of those in which I’m sleeping as well — I will be thinking about autism in some way. You see, that’s because my beautiful, red-headed, skinny, tall, affectionate, hysterically funny son was diagnosed to be on the spectrum just after his second birthday.

On April 2, many people will be thinking about autism in some way, as it is Autism Awareness Day. My inbox runneth over with reminders from various groups to which I subscribe that April 2 is Autism Awareness Day. My Facebook page is inundated with similar reminders. It’s a powerful thing to see so many people rally together in support of a special needs community. But at the same time, I wonder what this day means to those people who are not directly affected by autism. What would it have meant to me two and a half years ago? Probably not much.

On April 2, most news outlets and many talk shows, some schools and some radio shows, will devote some time to talk about autism. They’ll spout out the statistics—1 in 68 children, 1 in 42 boys—but what do numbers mean to those who aren’t personally affected? Those who don’t have a child, a grandchild, a niece or nephew on the spectrum? Those who don’t teach children in special needs classrooms?

The statistics, while important, have been repeated so many times that I’m afraid they’ve lost all their meaning, their importance, their impact. And they shed little light on what it means to have autism. We need to be aware of more than just the statistics.

Awareness is important. By being aware, we can understand. We can empathize. We can restrain our judgments. We can attempt to be helpful. We can learn. We can teach others what we know.

So if you see a child throw a tantrum in the middle of a store, don’t judge. Don’t shake your head. Don’t mutter things under your breath. This may not be a tantrum — it might be a meltdown due to overstimulation. Children on the spectrum have difficulty expressing themselves and can get overwhelmed by lights, noise and activity around them. It’s difficult for them to process the flurry of activity that you or I can simply filter out.

If you see a child preoccupied with his or her iPad or another electronic device, don’t judge. Maybe this child is on the spectrum. Many such devices are not only used to aid in communication, but can also be great tools in helping a child who is overwhelmed by the outside world. They provide a focus, and often white noise, to the cacophony of noises and whirlwind of activity that a child on the spectrum cannot handle.

If you see a child refusing to eat certain things, eating with his or her hands, or being hand-fed by his or her parents, don’t judge. Children on the spectrum often have sensory issues with food, and avoid eating—and even touching—things of certain textures.  Autism can affect one’s motor skills as well, making eating with utensils a struggle.

If you see an older child being pushed in a stroller, don’t judge. The child isn’t lazy, and neither are the parents. Strollers are often a necessity for older children on the spectrum, whose poor motor skills make walking long distances a struggle. Also, children on the spectrum may pose a risk for elopement — or running away. Strollers can assist parents in cutting down on this safety risk.

If you see a child flapping his or her arms or walking on his or her toes, or making strange sounds, or repeating the same words over and over again, don’t look away. That child is beautiful and perfect just as he or she is. Smile at him, even though he may not smile back.

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

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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.

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Why This Birthday Invitation Matters

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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.

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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If You Love Someone With Autism, You Love a Snowflake

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“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

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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.

The Mighty is asking its readers the following: What’s a moment that changed the way you think about a disability or disease? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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