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A Sister’s Sacrifice

Suyser sisterBy Dara Berger

I stood there looking up at the cheerful holiday decorations trying hard to fight back the tears that were about to come streaming down my face.  For a minute I actually thought I was going to lose the battle.  When you have a child with autism you can get pretty used to dealing with some of the most uncomfortable and unpleasant situations but this one was even beyond what one should have to handle.  I understood the severity of the situation the moment I picked up the phone and heard the directors voice on the other line.  There were no pleasantries exchanged.  It was right to the awful point that my son had bitten someone again and I needed to come pick him up right away.  I told her I would be there in 5-10 minutes and she was appreciative of my immediate action.  So many thoughts raced through my mind as I whisked myself out of the house and feverishly trudged the three block walk to my son's school.  One thought I had was “were they going to kick him out today?” I couldn’t tell.  It felt like everything was going in slow motion, but somehow I finally arrived up at his school.

The director came out and explained in detail that he had bitten a therapist in the face but luckily it did not break the skin this time.  Then he proceeded to kick his teacher and hit someone else who tried to intervene.  It was impossible to figure out what might have triggered his horrible behavior nor did anyone seem to care to.  Next they explained how they wanted him to stay home the next day, since there was a field trip that would produce a lot of change that he might not be able to handle.  I just nodded with agreement and walked over to look at the cheerful holiday decorations on the bulletin board.  All I could do is scream in my head how unfair this all is and why does someone need to suffer like this.  It was just all too much in that moment and for minute I thought I was going to fall apart right then and there.  And somehow by the grace of god I didn’t.  Instead I took what felt like a hundred deep breaths, closed my eyes and bit my lip hoping the feeling would just pass.  And it did just like that. I was able to wait for them to bring my prisoner son to me which felt like an eternity.  I took him home and thought “how can we keep doing this?”  "Why can’t he just go to f*&$ing school like his sister?”  “Why does each day have to be this hard?”  I am a really strong person and this I thought “is too much for me.”

I brought him home and went through the rest of the day like a robot since my emotions were in such high gear.  It seemed like one more little thing could really throw me over the edge, so I was careful not to come in contact with anyone or anything. We picked my daughter up from school and I took her in the other room to talk when we got home.  She and I had planned a special day for the next day, since she had a 12 noon dismissal before winter break.  We were going to have lunch at one of her favorite places with the really good french fries and do some holiday shopping.  I explained to her how Dylan had behaved really badly at school and needed to stay home tomorrow.  She has actually gotten really used to these sudden changes given they happen so often.  She immediately responded with “we’ll just bring him with us everywhere we need to go.”  I didn’t have the heart to tell her right then and there that her solution as thoughtful as it seemed wasn’t going to work.  The truth is her brother was in bad shape lately and traipsing him all over town wasn’t the best answer.  Fortunately I was able to get a babysitter on such short notice and we went about our day.  I desperately needed to give her that sense of normalcy of spending time with her in a that “normal" way.  She hadn’t been out to a restaurant in a while since her brother did not do so well eating out.  I was able to give it to her after all, even though inside I felt guilt ridden that I had left him home to give her this day.  I felt like a terrible person not taking him, but I just had to put her first for once as she seemed to sacrifice so much everyday for him.  It’s one thing for me to sacrifice everyday but she is just a child.  "What should she know about sacrifice at six years old?”  And unfortunately she seems to know way too much.  Everyday I beg her at one point to stop making so much noise since she is upsetting her brother.  Or I bribe her to come out of her room in the morning when I can’t listen to him say 50 times “Jessie come out”.  Then I get short with her for not just giving him a toy that he is getting so upset over.  I shrug my shoulders and think “when has she sacrificed enough?”  

I know in my heart she will be an amazing person one day for what she has been through.  How can she not?  She will not look at the world the way that I did when I was a kid.  She has had to look past her own needs and wants almost everyday.  It has been forced upon her.  I wish life could be so simple at times for her.  I know it should be and it isn’t fair.  In fact it downright sucks a lot of the time.  Having a brother with autism has to be one of the hardest things.  Unfortunately as her mom, I may never know just how hard.   This is what I do know.

She doesn’t always get to go to family functions like a wedding or bar mitzvah.

She misses invites to barbecues.

She doesn’t get to go on vacations unless they are Dylan friendly.

She has to adapt to sudden changes in plans.

She has to experience her brother in pain so much of the time.

She has to sacrifice all the time.

Autism is like a black cloud that is always there hanging over all our heads.  

This is what I hope comes out of all of this for her.

I want her to feel lucky that she does not experience what happened to Dylan.

I hope she sees the good in the world like all the people who desperately want to help heal her brother.

I hope she understands how much stronger this has made her.

I hope she feels that Dylan has made her a better person with everything they have gone through together.

I hope all the sacrifice feels worth it that she got to help her brother.

I hope she feels like an amazing person.

Dara Berger is a writer who is just putting the finishing touches on her first book about preventing autism due out later this Summer.  She is also a documentary filmmaker that thrives on exploring meaningful issues that touch people’s lives.  Dara just received her health coach certificate from the Institute for Integrative Nutrition and plans to start a practice where she can assist people in healing themselves from chronic health issues as well as preventing them



Thank you for this Anne.

The extreme concern is not only the media, the doctors, etc. who continue to brainwash people into thinking autism is not triggered by anything but the neurodiverse thinking parents. They actually have convinced the masses that autism is just a different "way of being" and so many gullible, oh so ignorant people buy into this. When I read bloggers such as Mom Nos, Diary of a Mom, Stimeyland and all the so called adult autism bloggers (e.g. m. kelter-Invisible Strings) I honestly am frightened for our kids. These people not only want to convince the world that autism is fine but we should actually welcome it as parents. Where does that leave our kids? No where and with even less help because they take all the seriousness out of the disease, Whether they want to accept that or not autism is a disease. These clueless individuals also directly and subtly make fun of anyone who believes vaccines have anything to do with autism so it shows their intelligence level but watch for them putting out books and trying to sell the "autism is grand" theory more and more. We must fight back against that false information. Keep up the great work!

Katie Wright

So beautifully written- thanks Dara

Cherry Misra

I wanted to write "beautifully written", but then I realized that this says so little - for a moment in time that is full of sadness and pathos and human goodness, and all the other emotions that come out of autism. Im so glad you gave your little daughter her afternoon out.
I wonder when this will ever end? Lets pray for the success of Robert Kennedy Jr. . Long ago I was a little girl who almost never had a day out with mom. Why? Mom was sleeping. She had low thyroid, thanks to the mercury in her dental work. Thyroid pills and endocrinologists did not exist in those days. Actually, I dont think it was so bad for me, but when I think of it now I feel sad for my mom, struggling to live her impaired life that she was unable to understand and no one could help her understand. - One more victim of the American Dental Association.

Joanie Calem

Dara, I so understand every single word you wrote here! My kids are now 23 and 21, 23 year old NT young woman, 21 year old young man with autism. But yeah, there were so many days that I spent on the edge of tears, dreading the phone call from the school that inevitably came. And yes, your daughter will grow up to be amazing and empathetic. Mine is currently producing a one woman show about being a sib. Here are the lyrics to a song I wrote about the exact same issue, called Family Photos. Which I know is really just a snapshot in time, because the future holds more surprises for each of them, but at this point I am pretty sure that both of them will rise to whatever challenges come their way.

Family Photos © by Joanie Calem, October 2016

Sara’s brother plays with her all day all the time
And Charlie’s baby sister can run and jump and climb
Ronny laughs about the fun things they do on their walks
Mommy – when’s he going to talk?

When I’m at Denise’s house we all play after school
And everyone takes turns and knows the games and all the rules
He just flits around the backyard making crazy sounds
Mommy – why’s he throw himself around?

Our smiles were wide as rivers
We looked like we could fly
The perfect TV family
How those old photos lie….

At every family gathering, on every holiday
We laugh our movie laughter and pretend it’s all okay
I hate my grandpa’s scornful face, my cousin’s rolling eyes
Mommy, you promised he’d be fine.

Our smiles were wide as rivers
We looked like we could fly
The perfect TV family
How those old photos lie….

My friends all gather at our house to hand and pass the time
And every time he’s with us something awful goes awry
Meltdowns and screaming and he’s always blaming me
Mom, I’m leaving, I’ve got to get free.

But if anyone should dis him
Or if someone makes a face
I’ll be the first to set them straight and put them in their place
And whoever wants to love me
You’ll see it in my eyes
I come along with baggage but those old photos didn’t lie.

Our smiles were wide as rivers
We looked like we could fly
The perfect TV family
It’s true, those old photos didn’t lie….


I thought my son's older sister had escaped.
Oh foolish me.
She had Kawasakis as a two year - now I understand that it came from her fourth DPT shot seven weeks before. Yeah, I know that now . It only took me two and 1./2 decades to figure it out.

During that time when she reached puberty; what I thought was a cute little attitude as a child turned into full blown well I did not know what it was. Sitting in her room all the time, most days and if I entered I faced what I thought someone with deep hatred toward me. Only to get up and be the life of the party, bringing in the whole high school band to have a party, and telling me about it before they began to arrive.

She was not just an A student; she was an honor student. She did not just have a good solid IQ; she had an IQ of over 130.

She had bipolar that went into full gear at age 14 when her period would not stop and she almost bled to death.

Worse; she kept on getting vaccinated. It was like it was out of my hands. They went after her during highschool every day , and it did not take much for her to comply as she was driving by that time and did it herself.

Vaccinated again when she started nursing school after she finished her biology degree.
Vaccineated again when she started her nursing carreer.
Vaccinated again when she sliced her leg on a tin roof to her chicken house

Yeah , did great in school. She went to school, and was in the highest classes of calculus, physics, chemistry, but her personal life was in shambles.

I don't want to scare any of you young parents. I just want you to know more than me. I wished I had known when she was 14 ,or even 16 and for sure at 18 before I sent her off to college, or even 21, or even 24. I What I did not know; I want each of you all to be aware. Aware that vaccine injuries do not always result in autism; that this hypothalamus, endocrine disease has a way of affecting us and we just don't know.

Yeah, my daughter sacrificed for her brother too. I was so busy thinking about what to do with him next that I did not --- I don't really know. though if that would have mattered. I was so clueless, I just needed to know and if I had; I could have got her help. Her personal life might have been so much better. .

Laura Hayes

Thank you for putting into words what so many of our children and families have endured, Dara.

It is heartbreaking what goes on in so many of our homes on a daily basis.

Just continue to do your best. There is no other choice. I will say a prayer for you and yours today.


I know this story all too well. I, too was constantly being called by the school, never knowing what my boy could have done that day. He was very aggressive and the school did not have the first clue how to handle him. He got suspended so many times, he was kicked out of school (public, he was 5 and in kindergarten.) We went through so much anguish and heartache over his struggles, we really didn't know if it would get any better. And his poor sister had to catch the brunt of all of it as well.

We had to leave my in laws on Xmas eve long ago, because our son was screaming "HOME!!" over and over, until we just could not take it anymore. So in the dark we packed up the car and left, grandparents and aunts and uncles helping and crying as we prepared to leave. No Xmas eve or Xmas morning with the family, no presents exchanged, only sadness. It was one of my most painful autism moments, it still hurts to think back to that day.

However, my point is to never give up. That out of control, kicked out of kindergarten, Xmas eve-leaving child has blossomed into the most amazing 15 year old boy. Tomorrow we take him and his 13 year old sister on a trip to spend Xmas in Thailand with those same grandparents and aunts and uncles and cousins, something I never dreamed possible all those years ago. He is beyond excited (albeit a bit nervous about the food choices!) about this adventure. And he is thriving in high school, after many many years of hard work. So, while things may seem dark and dismal, there is always a chance they can get better! That's my very long winded point to this story! Even when it seems like it's all at rock bottom, there is always hope that things can improve. Keep the faith!!!


Dara-I have a son with autism and he also has an older brother without autism. My older son has had to make the same sacrifices and go through the same difficult things you describe. "Autism is like a black cloud that is always there hanging over all our heads" is the perfect description for what our family is also feeling. May God give us all the strength to keep living this challenging way every day. We must never give up hope for a cure no matter how long it takes.

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