erika: mother, aide, rainbow-maker

When I admit, out loud, that I not only have a child with a significant disability but that I also choose to work with 3, 4 and 5 year old children in a special education classroom, it even gives me pause from time to time. I wonder if the person I am speaking to is thinking, "Does this woman enjoy pain? Does she milk rainbows out of her frustration? Who gives her those really good happy pills? How does that work for her, exactly?"

Sometimes it doesn't work very well at all. Sometimes I feel very overwhelmed by sensory needs, impulsive behaviors, unintelligible speech, and hearing my own voice repeat the same phrase twenty five times in two minutes. Mostly, though, it has been a blessing I never expected. I never meant to work as a ParaEducator for long; it was a job I applied for right out of college when I was pregnant with my son. But after seven years I have to admit I feel strongly that the education field is exactly where I belong.

My son has fragile x syndrome, an inherited condition that causes mental impairment, ADHD, autism, and sensory processing disorder. Having a child with a disability has given me the perspective I need to work with children who have challenges and communicate with their parents.

We've all had that child who frustrates us, who makes us think we cannot possibly make a positive difference in their behavior. Sometimes the child needs a picture schedule to help ease anxiety, sometimes the child responds well to a behavior chart or other tangible positive reinforcements, and other times just the structure and consistency of school is enough to extinguish negative behavior patterns. And sometimes none of that works and we find ourselves crouched in the corner pulling our hair out.

It's important to remember, though, that you aren't the only one who is having a bad day. That child is struggling, too, and their parents are probably having a lot of hair-pulling nights at home. As the parent of a child who often gave his preschool teachers a run for their money, I'd like to give some thoughts about communicating with parents of disruptive children. Don't say, "Johnny had a bad day." This tells me nothing. Instead try, "Johnny struggled with controlling his body. He touched his friends without asking and often got up from his seat during carpet time. I had to ask him several times to complete the same task." Now I can talk to my son about keeping his hands to himself, tell his doctor about his difficulty remaining on task (if it continues to be an issue), and I never heard the words "bad," "problem," or "naughty." And please remember that there is always a reason for disruptive behavior, even if we don't see it.  

Tell us something good. I don't care if the best part of my son's day was that he loved the chicken nuggets at lunch, I want to hear it. In our program, we call it "sandwiching." We talk about something we're learning in the classroom, talk about a problem we're having or a difficult part of the day, and then say something positive. Here's an example: "We're working on the letter Rr this week. We made tissue paper rainbows. Johnny enjoyed making his, although he was upset when we had to clean up and threw the materials. He loved the chicken nuggets for lunch and did a great job using his words to ask for more."


Sometimes parents are the experts. Especially when you're working with a child who has a syndrome, you may find that the parents have extensive knowledge of the condition. Take advantage of all the work they've done! Ask for copies of articles they've read and for notes from the conferences they've attended. We want to help. We really, really want to help. 


Remember to laugh in the funny moments, like when a boy is hiding the rind of ham in his pocket because he doesn't want you to make him eat it or when you have to say things like, "Don't put your head in the toilet, honey." As parents, more than anything, we want you to see our kiddos the way we see them -- as loveable, silly, and full of potential.

About Erika...

My name is Erika and I blog over at the other lion about my son, Punkin, who has fragile x syndrome. I'd love to answer any of your questions about parenting a child with special needs.