I’m a big fan of the show Parenthood (and, for that matter, the 1989 film of the same name that was the show’s inspiration). One of the main characters, Adam, is a married father of two children; the younger of the two, the son, has Asperger’s. Although I’m not intimately familiar with Asperger’s, I can relate to the life of the special needs parent. On many occasions, I’ve seen pieces of myself in the character of Christina, Adam’s wife, a stay-at-home mom who gave up her career for her children and now fights the daily battles associated with being “special”.
On a recent episode, Adam and Christina were considering hiring a bug expert for their son’s birthday party. When they met with him, however, they realized he was rather…odd. Predictably, the bug guy was revealed to have Asperger’s, and Adam and Christina debated among themselves what they should do. They were clearly uncomfortable with hiring him, but also felt hypocritical for considering not hiring him. At one point, Adam told Christina that they weren’t required to be “ethical superheroes”.
I often feel like I need to be exactly that – an ethical superhero. I talk about ethical issues, prenatal testing, and ending the use of the r-word on this blog. I feel strongly that I should use the gifts I’ve been given (my children and their uniqueness) to educate others on the causes that I hold dear. But…that’s a lot of pressure! I’m not perfect, or even exceptional, and I’d like to just do my thing and go largely unnoticed.
When Sarah Kate turned three, she transitioned from early intervention to receiving services through our local school system. I was adamant that she attend private preschool, rather than the school’s preschool program, because I wanted her in a class with typical children, not the melting pot of kids with developmental delays. Her physical therapist suggested to me that due to Sarah Kate’s strengths – advanced speech, in particular – she could be a great help to the speech-delayed preschoolers. I would have none of it.
Back then, I believed that the best thing for MY child was private preschool, and I really don’t regret my choice. Looking back, however, I do feel a little pang of guilt that I wasn’t willing to do something that would potentially have contributed to the well-being and development of other children. Now that I have a second child who will almost certainly be speech-delayed, I have a newfound appreciation for why that therapist urged me to reconsider. As I said before, I really don’t regret my choice, but was it the right choice?
Being a mom – any mom, not just a “special” mom – involves making ethical choices constantly. Sometimes the right choices are glaringly obvious, while at other times they are not. Sometimes there is no wrong answer, and sometimes there is no right answer. Sometimes the choices we make are highly visible examples for our children, whereas others may never be known to anyone but us. We still have to make these choices.
Can we be ethical superheroes? Probably not. Should we try? Absolutely. Every choice that we make develops our character as individuals, and by extension, develops the little people who have been entrusted to our care.
I feel very similar and have had these discussions in regards to the bus for my daughter. She attends a regular public school that buses all children. Due to her need for a lift on her bus she is limited to the special needs bus. For kindergarten she was bused only with other children who had special needs. We decided it was important enough for us to push for her to be bused with other children attending her school that would include regular ed. kids. I feel like its also important for us not to group kids with special needs all together. I worry about Claudia's self-esteem if she is always grouped as a child with special needs. What are your thoughts, what does your oldest think?
I've never really asked Sarah Kate what she thinks, but she has always considered herself to be just like all of the other kids, and I feel like that's because she has always been treated that way – including being in private preschool. Now that she's in public school and a little bit older, she "gets" that there's something that's a little bit different about her, but it's really only an issue when they have a school program that involves dancing, or jump rope for heart, or other physically challenging activities. She's very intelligent and super-social, so physical limitations are the only thing holding her back. As far as the bus goes, she could ride the regular bus, since she wouldn't require a lift, but I always do the car line because I don't want her to have to deal with the bus.
As for Nathan, I'm not sure where I'll land on this issue. I want him to be thrown into the pool with all of the typical kids, because I think that's where he'll have the best chance to develop and excel, but… I think with him I may feel a little differently because his development will be completely different from Sarah Kate's. Will I want to push him as hard, or will I want to shelter him somewhat? My head tells me I need to push him, but my heart tells me he needs sheltering. 🙂