Living in the world of autism, I know many parents can relate to this awful reality. The squeaky wheel gets the grease. In other words, the child with autism often needs more of our attention, which often translates to less attention for our other children unaffected by autism.
This blog is dedicated to Lauren, my daughter and a past-forgotten child.
Lauren is a huge blessing to our family. She has matured into a beautiful, accomplished woman wiser than her years. For the first 14 years of her life she was an only child. My husband and I always wanted a house full of kids, so when I learned I was pregnant again, my husband and I were thrilled!
I remember telling dear Lauren she was going to be a big sister. She took it all in stride with an ear-to-ear smile. But after my announcement, she had a proclamation of her own:
- The baby could NOT be born on her birthday (which had me a little nervous since my due date was only five days AFTER her birthday.)
- HE must be A BOY. (OK, not sure I could pull this one off but sure. I agreed with this one. I had a mini-me in Lauren and now it was my husband Glen’s turn.)
Lauren helped decorate the baby’s room, attended the baby shower and fetched me crazy food cravings. She made the entire pregnancy fun!! Our new baby was something to celebrate together as a family. I look back to this period in my life with extremely fond memories that always bring a smile to my face.
Enter Jeff (yes! A boy!!), who came into our lives a healthy, typically developing boy on April 7th (2 days after Lauren’s birthday. Phew.) Number two of our planned brood of children had arrived and all was well.
Then, as many of my previous blog posts describe, something dramatically changed around 15 months. When we finally heard the autism diagnosis, all bets for more kids were off the table. Life was scary and uncertain. We had our hands full. Our dream of a large family came to a screeching halt at 4.
Many parents witness the horror and pain of their child’s regression into autism. What we forget is that our other children bare witness to this as well. Lauren, who was with me every step of the way in my pregnancy, was also there every step of the way through regression. And I was so consumed with finding answers for Jeff that I forgot to answer questions for Lauren.
During the throes of autism, Lauren attended the parent training for early intervention and Applied Behavioral Analysis at the ripe age of 16. She wanted to help, needed to help. She often did her homework in Jeff’s “school room” while he received early intervention. She gracefully took the job of calming his tantrums or laying Jeff down for a nap when I was at my wits end. She was really gifted with her brother. She participated in the drill work with her brother and his aides, and even involved her friends by taking “emotions” and “actions” pictures that were fun and entertaining. She intuitively knew that using people Jeff treasured would be more effective in teaching him.
Lauren accomplished all of this for her brother while earning straight “A’s” in high school. She was accepted into her first choice college. She is truly an amazing kid person. I am proud to know her let alone be her mom.
But for everything Lauren gave, she received little in return. Sadly, during much of that early intervention time, I was absorbed with Jeff’s needs. Shopping, hanging out, daughter dates for Lauren and me were nothing but figments of her imagination. It got to the point where I would write her a check to manage her life because I couldn’t. Lauren needed me but my guilt in leaving Jeff behind (despite the presence of his very capable father) stopped me from being the mom she deserved.
A story comes to mind about Lauren and the day when our worlds collided. I don’t share this story with any pride whatsoever.
After a tough day at school, Lauren came into the room and told me she really needed to talk to me. I knew it was going to be about some drama because she’s sixteen and in high school. So she went on to tell me how everyone sucks and yada yada yada and I said to her, “Lauren, I don’t care what your friend said. I don’t care what happened at your school today. You’ve got that bitchy sixteen-year-old look on your face about some friend telling you something that hurt your feelings. I really don’t care. She looked at me for a moment and started crying. Then she said, “you know, you have TWO kids, mom.”
My world stopped. This is the other moment in my life where I died a little bit inside. I had nothing for anyone but Jeff. I became this single focused person that no one wanted to live with. I didn’t even want to live with me. I tried to think back to the time when I was a nurturing, fun mom who gave Lauren what she needed. That is who I wanted to be again.
I apologized to Lauren. I was so grateful that she was the one to turn my emotions back on. I ran after her promising to buy her a car to make up for my inexcusable behavior as I imagined a huge FAIL sign over my head.
Lauren’s wise words and her ability to call her mom to the carpet helped shape me into a more well rounded person today. I will never say perfect but SO much better than in those early years.
Dear Lauren continues to school me to this day on balance. While I still very much obsess about Jeff and his needs, I have learned to take a break. I have also learned that spending time with my daughter is beyond precious, and I have grown to need it more than she does! Then there is that husband of mine J (another story for another time.)
Lauren and I discuss this time in our lives rarely, and when we do it comes with many tears. It was incredibly scary and isolating for both us, so much so that even today when we talk about it, the helpless feelings return. Inevitably we are interrupted by Jeff’s laughter from another room and we are pulled back to the present. We are reminded of his progress and we marvel at it. He immediately changes our mood with love and happiness.
The goal of sharing this story with you is to remind parents that it is ok to take a break and have “kid dates” with your children off the spectrum. Creating an environment for a healthy family life will be much the subject of future blog posts. Balance is the key – even in an unbalanced, upside down world called autism land.
It’s easy to look back now and share advice, with so much progress under our belts. Hindsight is 20/20! But please – other families out there – try to avoid this trap. All of our kids have special needs, even the ones without a diagnosis.
In the meantime let me profess my love again to an amazing, talented, beautiful daughter that we are so proud of. I LOVE YOU LAUREN! You and the siblings of children living with autism around the world ARE MY HEROES.