In the midst of the Bean’s evaluations and meetings regarding preschool, I noticed something that gave me pause. The administrators and therapists who were helping us through the evaluation process were handling me and the Bean’s “disability” with kid gloves. They were cautious about suggesting that the Special Needs school might be the best fit, and were very diplomatic about mentioning their findings during their evaluations. “Why”, I wondered, “would they need to be so careful? It’s not like we don’t know that the Bean has global developmental delays.” Then it hit me!
There is still a stigma in our society about people with special needs. I pride myself in being accepting of others regardless of differences, and even I’ve been guilty of making snap judgements about and feeling pity for people who need extra help from a device or human assistant. I’ve tried to be very matter-of-fact about the Bean’s needs and limitations, but when we first got her walker, I resisted bringing it out in public because I didn’t want people to stare. If she’s just walking holding both my hands, people can assume she’s a year old and just learning to walk. But if she’s got a walker, it’s obvious that “something is wrong with her”.
I have felt the same way when people ask how old she is. I am sometimes tempted to tell them she is 12 months old. After all, that’s how big she is – wearing 12 – 18 month clothes. But I’m a little too honest for that, and I don’t want to deny who and what she is. When I respond that she just turned three, people are pretty quick to add things up and realize that she’s got special needs. Sometimes I explain; often I just say “she’s pretty small for her age”.
The thing is, in a lot of ways, she’s right on track for her age. She’s high in the social development ratings, and understands a whole lot more than she demonstrates in standardized testing. Sure, she’s miles behind the other “typical” kids her age when it comes to preschool tasks. But she’s come an incredibly long way, especially in the last 6 months. I’m so incredibly proud of her.
As the Bean gets older and starts to understand more, I worry a little about how to address these things with her. Now that we take her walker with us everywhere we go, kids at the park DO ask why she needs it. I tell them that she has trouble walking by herself, and needs to use the walker to get around. I figure honesty is the best policy. Most young kids want to try it out. Older kids look thoughtful when I respond to their questions.
The most interesting reaction I’ve found is the difference between men and women. If we’re in public…say walking down a sidewalk in the city while we wait for Daddy to get done at work…men glance at the Bean and look away quickly; I’m not sure what runs through their heads – perhaps they wouldn’t even have noticed us except for the walker. Women give us genuine smiles that reach their eyes; they see how cute she is with her tiny walker, and understand that she’s just a kid learning to walk. There may be some sympathy for our struggle, or some thoughts of “I’m glad I don’t have to deal with that” in their heads, but I don’t feel like they avoid us. Of course, this trend is not universal. I’ve had men comment on the Bean’s determination getting up a hill, and I’ve had women glance and move on.
I think it’s different when it’s an adult who is struggling down the street. We expect that kids are going to need some help, but we feel sorry for adults who aren’t as self-sufficient as we are. There are people and organizations out there who are doing a great job of helping adults with special needs to integrate into society and be as self-sufficient as is possible given their limitations. We may or may not need their services when the Bean gets older – who knows.
In the meantime, I’m just so grateful that special needs services are so readily available in our area. With budget cuts and economic hardship looming over everyone these days, I only hope that these services continue to be available to those who need them. I would never have known how to help the Bean reach toward her potential without the help of her therapists in her first three years. After two weeks of preschool, I’m already seeing a leap forward in her communication skills, gross motor skills and even fine motor skills. Without the assistance of her teachers and the example of her classmates at school, she wouldn’t be making these big strides.
I am so excited to see how things progress for the Bean in the next few years. She’s a determined, hard-working, happy little girl, and I know she will continue to surprise us with her accomplishments. I was recently asked about my goals for the Bean for the next three to five years. Before having a child with special needs, I would have replied with goals around getting good grades at school, reading at or beyond her age level, and learning to play an instrument…all things I was doing from age 6 – 8. But now, my goals for the Bean are to be able to walk without the walker (see note below), to be able to play with her friends without assistance, and to be able to communicate in small sentences. It’s not that my expectations have been lowered…I think I’ve just figured out what is most important. Sure, it’s good to do well in school and become educated in music and culture. But I think it’s even more important to be active, to be a good friend and to communicate effectively with those around you.
(Note about the goal of walking without the walker: If the prognosis was that the Bean would always need a walker, this probably would not be a goal for her; but all indications point toward eventually being strong enough to walk unassisted. If she needed a walker for the rest of her life, we’d make peace with that and move on).
Back to the cautious and diplomatic handling by the evaluators and administrators in the school system. When I realized what was going on, I was frank with them. “I try to be very realistic about the Bean’s abilities and needs. I want her to go to the special needs preschool so that she can get as much assistance as possible. I don’t have an ego around what school she goes to or how much help she needs”, I declared. They were visibly relieved to hear it. “Not all parents are as open-minded”, I was informed. “We just want to give her the best chance at success.” Thank goodness! Me too!