By 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