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Autism, Epilepsy, Light.

Stop. Sit. Play. Enjoy.

Julie OBy Julie Obradovic

A few weeks ago I attended the Freshman parent night for my eldest. He will be attending high school next year, and it was our opportunity to check out the school. 

Thirteen years have gone by in a flash. It's been hard not to stop and stare at him just a little bit longer lately and think about how quickly he has grown up right before my eyes. My thoughts venture from t-ball games, piano lessons, soccer tournaments, Disney World, and so much more. It makes me teary, even though I am so excited about him moving on to the next stage of his life. As the mom of a child who has had a completely different experience than him, I, perhaps more so than many moms, do not take one ounce of his blessed abilities for granted. He's happy, kind, respectful, compassionate, smart, talented and has lots of really nice friends. The future will be whatever he wants it to be. It doesn't get any better than that.

My youngest is growing up just as quickly, if not more so. Seven going on seventeen, she has been like a tween-ager for the past three years. I don't know if that's how it is for all youngest children, but I just can't keep her from seeming much older than she actually is. She too is a blessed child, well-liked, brilliant, beautiful, athletic, and a real fireball. Passion and compassion run deep in her DNA. I don't take an ounce of her abilities for granted either.

It's painful to admit, but when I look at my middle child, who was not as lucky as her siblings, I don't have the same nostalgia for her youth as I do my others, or the same excitement for her future. The truth is, as I reflect on the last ten years of her life, my memories are overwhelmingly filled with anxiety, guilt, and pain. And as I look forward to the next ten, I am instantly shackled with sadness, fear, and worry. How horrible.

Strange then when I look through the photo albums of our family I see her adorable face beaming back at me. From them, no one could ever tell anything was ever wrong. She's smiling, happy, beautiful, and full of light. She's in Disney World, playing t-ball, swimming, making silly faces, ripping open birthday presents, and wrestling with her dad, exactly like her brother and sister. And yet, she was not like her brother and sister. 

Was she?

How I wish my memories of her over the past decade were filled with us reading books together, going to the park, and taking gymnastics classes. Because we did all of those things. But it's almost like I can't remember them. For when I think of these past ten years, as we only had the first five months of her life without a health problem, my most prominent memories are completely and totally different.

Supplements, doctor appointments, blood draws, poop collections, urine collections, x-rays, therapists, therapies, IEPs, gluten/casein free foods, seizures, special diets, enzymes, ambulance rides, emergency rooms, insurance bills. Conferences. Getting up in the middle of the night. Hours and hours on the computer researching, networking, reading, and advocating. Crying. Praying. Depression. Exhaustion. Anger. Fear. Fear. Fear.

Do not misunderstand me. They were all worth it in the long run. But those are truly my biggest memories of her childhood. And much of that is my own fault.

But for the insistence of my mother, thankfully now, I have others. It was she who finally said something in 2008. 

"Alright. That's it!" She laid into me one day. 

"You have to see her, not just the illness! Not just what she can't do anymore, but what she can! She can feel that, Julie. She can feel your sadness and disappointment and worry and guilt. We all can! You have to see her and be with her without all of that. Please! Stop it! Sit with her! Play with her! Really play with her, and not for therapy either! Enjoy her! I know this is hard. I know she isn't the little girl in the way you envisioned. I know this isn't fair, and it isn't what you wanted for her. But guess what? She's still your little Evie. She's in there! And this is how it is right now, like it or not. She needs to know she doesn't make her mommy sad and anxious all the time. She needs you to be happy around her! Just like you are with the others. And this time will go so fast, Julie. You know that. You must choose to make other memories!"

I was so angry when she said it. How dare she tell me I wasn't enjoying my child! And how dare she suggest there was anything to enjoy! You don't stop to have a tea party when the house is on fire, mom! Don't tell me I have to enjoy the fact she has brain damage that could have been avoided! Ooo, I let her have it. How could she be so insensitive? Like I needed this now? We got in a big fight.

And yet, deep down inside I knew she was right. I just didn't want to hear it. For on top of feeling the tremendous and unbearable guilt of getting my daughter into this situation in the first place, I was now screwing up the way in which I was trying to get her out. There were moments, and are moments, I just can't breathe.

Not long after the lecture, two tickets to the American Girl Doll store showed up on my kitchen counter. Mom had purchased an evening of Mother-Daughter bonding in Chicago. We had private shopping, private dining, and all sorts of fun activities arranged for us. Eve had received a doll for Christmas the year before. It was still in its box put away in the closet. She didn't know how to play with it...or so I thought.

I was apprehensive about going. Although I wanted to spend the time together, I was worried about being surrounded by a bunch of typical, chatty little girls all night. Could I handle being faced with a whole store full of little girls? It was selfish, I know, but it's the truth. When the cup of what you can tolerate emotionally is already at the rim, you don't go places and do things you know might make it overflow. It's a careful and calculated walk through life, just like when you really do have a very full cup in your hands.

We kept the date anyway. It was a beautiful day on the Magnificent Mile. The flowers were Julie O 2blooming and the sun was shining. Alone, out to have fun with her mom all by herself, something magical happened. She came alive. She held her doll close and showed me all of the clothes she would like to get, mostly by pointing and smiling. We took a picture together and had a delicious dinner in the private dining room. She fed her doll pretend food. She answered the questions from the conversation box. What's your favorite animal and why? Dogs. They love you. 

These were things I had never seen her do before. Say before. I was stunned. Had she been able to do this the whole time? Were we too busy working on reading skills, physical therapy, and micromanaging her diet to notice? Was I so focused on her being completely and totally recovered that I was failing to rejoice in what already had? I was overjoyed and horrified simultaneously. We got the doll's hair done and walked around the city the rest of the evening holding hands. If there is a heaven, I can't imagine it any sweeter than that.

As I drove home that night, I was overwhelmed with gratitude. Even if I never got it back, the connection we shared that day...even if it was only for that one day and never again...I had that. The most meaningful, most memorable, and happiest time I had and have ever spent with her. I called my mom in tears. Happy ones.

As I continue on this journey of Autism advocacy and recovery, I have made some incredible friends along the way; some in real life, some I'll only know in the virtual world. Many of those virtual friends are parents of young children. I'm sad I wasn't able to prevent their children from joining mine. It's inspiring and depressing to watch the next generation of Autism parents coming up the ranks. They are a tough brood.

I sometimes wonder if this is how the first generation looked at me. Passionate. Angry. Ready to kick some ass. Completely driven and focused. Loud. Yelling from the keyboard. I love them, and I pray for them. For I see myself seven years ago in them. And I worry for them.

To them, and to anyone else who needs to be reminded, let me give you the painful, yet life changing advice my mother gave me.

Your children are in there. They see you. They feel you. And they need you, especially you, to see and feel them. Be responsible for the energy you bring to them. Make sure they know you feel more for them than just the pain and anxiety you feel deep in your heart. Make new memories. Good ones. Ones that have absolutely nothing to do with Autism. Treat them like a child as much as possible, not just a medical case. It's easy for them to get lost yet again in all of this. Don't let that happen.

Whether your child ever recovers from Autism or not...and I pray with all my might for you that they do...they will only be this little once. They are children. Stop. Sit with them. Play with them. Enjoy them as they are, as hard as that may be for some of you. You must choose to make new memories.

There's so much more to our children than the Autism. And that's at least one thing I agree we need to celebrate.

Julie Obradovic is a Contributing Editor to Age of Autism.


nikole chilcote

I'm so happy to have read this story and that you enjoyed such a special time with your daughter. I have four children myself, one 20 years old, one who would have been 15 years old this year but was lost in a tragic accident at the age of 3,one 6 years old and one soon to be 5 years old. I've enjoyed every moment of my children's lives, I guess what losing a child (and not to Autism) does is, makes us realize even more so what we have. My youngest two have Autism and we don't raise them any different than we did the first two. I see the differences in them yes but I still feel that no matter what these are my children, they were blessed upon us and they need us, ASD or not. So in some respects I can see why your mother would say what she said and I also can see your side of it too. I think when a different approach is taken with some of these children it is amazing what comes of it. I also know that there are some parents that don't have it that good and it's hard for them to see past the ASD because it is so much of what their child has become and it's saddening that this has happened to any child at all let alone the mass numbers of them there are today & the many more to come.

Janet Levatin

Julie, Thanks for the beautiful story. As a pediatrician I've seen all kinds of parental approaches to children with ASDs. One story that sticks with me is the following. I had a child around 10 or 11 with Asperger syndrome in the practice. The mother was home schooling her, as attending school was just too difficult for the girl, so they had a lot of time together. As is natural, due to her impulse to help, the mother was always trying to "fix" things about the child. One day the child said to the mother, "Why did you even have me? You don't seem to enjoy me at all; all you want to do is change me." The mother realized that she was not taking time to enjoy her daughter and altered her approach to include much more loving acceptance and enjoyment. I thought it interesting that the suggestion came from the child herself.


As the Mom of a 26 year old all I can say is WOW and thank you SO MUCH for writing this!! You certainly got me in the gut.
I hope that I did enjoy him as much as possible as a child and if not, well, he is staying right here with us and I will enjoy him more every day.
However, that doesn't take away the fear. I live with fear every minute and hour because is future at the moment is bleak due to severe lack of services; still I'll try to focus more on working hard to change things so he can live the life he so richly deserves and less on useless worry and fear.


Thank you for this lovely essay. What a sweet memory for both of you to hold dear.

Rn mommy

Weeping here. Wow, hits home. Beautifully written. Thank you!!


Julie, loved your article as it is perfect timing with the holidays and the new memories being made. It is important as both parents that we not only see our children as children, but as moms and dads as wives and husbands. As you look forward to cherishing the memories with your children, I think parents need to remember each other. Husbands need to get their asses in the game and take on some of the responsibility and stop looking at their wife as the neurotic food nazi that is taking his attention away for that child. Wives need to loosen the knot, a bit, to allow us husbands to stumble through the routine a while until we get our own groove. We do things differently, that will not change, but we do try to achieve the same result. It could be a start to seeing each other for the beautiful people you married in the first place.


Sobbing uncontrollably! You laid out so many of the anxieties and fears that I also have for my Lily so eloquently. Thank you for sharing and reminding us of the big picture.

LJ Goes

Julie O. Quit doing that. Making me sob. Uncontrollably. Thank you from the bottom of my heart. xoxoxoxoxoxo lj


Your post reminds me of something a dear friend said to me recently. She has just lost her mother to a long battle with breast cancer, and, in fact, her new baby was born the day after her mother died in July. So she living the joy of new motherhood along with the grief of losing her mother. Because this is her third, she is a wise "new" mom. In so many conversations, people ask about what the baby is doing now--the first time he rolled over, the first time he smiled, etc.

As she pointed out, it's easy to see the "firsts", but time flies and it is hard to recognize the "lasts" with our kids and our parents.

Every day is precious. Every interaction matters, and your message is so true. Thanks for such a wonderful post!


My son's first writing assignment said 'I love my mommy because she plays with me'.
I will keep it forever, physically and in my heart.


Thank you, Julie. In many ways this was a revolutionary post. You're not giving some Panglossian instructional on how to don the rose colored glasses ala that awful "Holland" poem. It's not a lecture at all since you put yourself through the not very simple process-- the first layer of strength is to admit to ourselves the depth of what has really happened in order to protect our children from more harm. The second layer of strength, which requires the first, is that we have to protect our children from what it's cost us.

What you wrote reminded me of the film "Life is Beautiful." Benigni's character will do anything to shield his son from being scarred:

Benigni makes this especially clear when he contrasts with a scene which embodies the typical escapist denial of horror- the "Holland/la la" denial that all autism parents are put under extreme pressure to remain in. I think Benigni was demonstrating exactly what he didn't mean by transcendence:


Beautiful story. I think I am in an opposite situation because my son is high functioning. Sure, there was a time when I thought he would never talk, but I have always just seen him as my son and not tried to fix him. It is probably because he is my oldest and so I didn't really have expectations of what he should be doing and when. Recently we are finding out through testing that his adrenal glands don't work correctly, so now I am working on trying to fix him, after almost ten years of life.

jacey smith

jesus julie..... i am a blubbering idiot. this one ranks up with your "bump in the road" article. i needed this to shake me back into reality again.
thank you for speaking the words we all should be say. i realize it is out of love and support... and i hear you.
truly, we are all doing the very best we can and i love and admire you as well as all the other autism warriors out there. but i also love your mom for "laying into you"....and then giving you an opportunity to see Evie (..rather than continuously fighting with you). good lady.... but i know you already know that. please tell her she is "laying into" all of us as you speak her truths to the autism parents out here. its good we hear it. we need to hear it sometimes.
i'm wiping my tears ... and getting ready for my son Alec's Winter Play at school in a couple hours. i will carry your words with me as I watch and celebrate him on stage with his classmates. thank you ... and your mom for giving me this gift.
happy holidays

Donna L.

Beautiful post, Julie. Brought me to tears as I realized how much I long for a mother like yours, one who could see my child as a human being worthy of unconditional love, rather than a disastrous project in need of constant fixing. I so long for my son to have a grandma who could just love him as he is, one who didn't turn every encounter with him into an amateur speech therapy session.

Thank you for this very important reminder of how no treatment or therapy can or should take the place of our kids' most basic need for love and acceptance.


Just beautiful. Sad and happy tears. Thank you for this.

emily's mom

Still crying...once when my daughter was about 5 I was rocking her, holding her tight trying to calm her down from a meltdown. At that time she could barely put 2 words together. As I was rocking her and she was crying she stopped and said in a very clear voice "I have feelings you know". Rocked me. Five years later I started biomed after attending ARI conference at Cherry Hill, NJ 2008. Last night she sang in her vocal concert at the middle school she attends (self-contained class with aide)Of course, I cried because no one else in the audience had a kid that could not put a sentence together until 3 years ago and was singing on that stage ...what most parents take for granted!At 13, she loves to sing, takes regular ballet class, plays with dolls's hair and likes boys. Is she "normal" yet? no...but I'm working on it...and I celebrate all that she can do.. Who knew all those Barney videos would pay off? it taught them about life through music...whatever works I your writing Julie..Thank you for another great one.

Deb in IL

Thanks to Grandma who had the courage to speak up, take the push back from the momma lion, and then wait for her words to ring true.
Thank you, Julie, for being brave in telling a lesson we all need to hear - focus on what we have, and we'll see the blessings they are.
Thank you, Evie, for being you.

Not an MD

Julie - Thank you for writing this thoughtful, insightful, and important piece. My mother is deceased, or surely she would have planned something very similar for me and my daughter, and she definitely would have given me a good talking to about seeing my child for the lovely person she is, as opposed to a child with a myriad of unfortunate sensory deficits. She would demand that I play with her more often and for longer periods of time, too. No doubt about it. And she would be absolutely in the right making those statements.

That said, as I plan to embark on a craniosacral therapy journey with my daughter (just to cross that off of my bucket list and see if it can help her), I will also plan to have some special, private time with my beautiful daughter, just the two of us. Thank you again, Julie. I needed a good kick in the ass from your mother. Please thank her for me.

Karen G

I cried when I read this, happy and sad tears. I came to the same realization as you a year ago. Since I've been spending time with my son, Elijah, just having fun, enjoying each other, and making memories, he has actually been improving in all ways in leaps and bounds. Thank you for sharing your story!

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