Jackie informed me yesterday that, when she has her own children, she will never tell them "no." Never. I smiled and wished her luck with that. Today, after coming home from school, she informed me that she thinks she might sometimes need to tell them "no." Sometimes.
Jackie is a healthy, mostly happy 11-year-old child with special needs. What makes her unique is that she has pervasive developmental disorder. While this may look different in every child, for Jackie it means that she has some autistic features mixed with a possible mood disorder, though some days I wonder if her mood swings are more related to her approaching "coming of age." (I do not believe there can be anything more emotional than impending menstrual cycles for a young pre-teen. Sigh. When did I become the mother of a pre-teen?)
Over the years, I have learned how to be more responsive and more intuitive to Jackie's needs. My husband and I can often sense what she needs from us and her environment, which is key to our preventing meltdowns and struggles.
We also feel strongly that we help her by having a support system for ourselves. We rely on a support team of family, friends, and people from the school system who work with Jackie. Sometimes we need respite care, an extra set of hands, or a parents' night out.
Our sitters are well trained to work with children like Jackie, and all of our kids look forward to the special playtime. We enjoy coming home relaxed and rejuvenated, knowing we are in a better place to cope with any challenges that might arise.
One of the hardest challenges with raising a special needs child is trying to keep people, including us as her parents, from attempting to force her into being a "typical" child. Jackie is different. She will always be different, and I celebrate that difference.
That said, it's not all roses. There are some thorns. We have struggled with defining what Jackie needs in her school environment. We have also struggled with therapists and psychiatrists who have tired a one-size-fits-all approach to Jackie's challenges, including the use of medication.
We resisted using any medications for a long time, despite the pressure to do so. When we had our fourth child, things really bottomed out for Jackie. She was in such emotional pain. We decided it was unfair to not at least investigate medications. We started out with high hopes.
We tried half a dozen medications over the course of 18 months. I know some children receive relief from medication, but Jackie never did. In fact, they had a negative effect on her. She seemed even worse. It was heartbreaking. We ended the trial and weaned her off all medication.
Jackie hit a new low while weaning from the medications. After a month, she seemed herself again. She become more in control of her emotions and behaviors, and her humor returned. I hadn't quite realized how much I had missed that. She seemed settled. I cannot quite explain it, but she just seemed more like the daughter that we knew and loved, quirks and all.
It's been about six months since she quit the medication trial. Jackie continues to improve. She takes two steps forward, one step back. (Sometimes it's more like two steps forward, three steps back.) She was recently able to transition from the special needs school bus to the regular school bus, which was an important milestone for her. Jackie continues to improve, even though the path is never a straight line but one step at a time.
No matter how much we attempt to prepare her to be confident, as she gets older, there will always be the pull to be more like the "typical" children. She will always want to be "normal." We embrace Jackie as she is. We have taught all of our children that each person is unique, and we encourage them to be accepting of others, even those who face challenges that may make them difficult to deal with.
How do you allow your child to be different? How do you allow yourself to be different from other parents?