letting it go

My name is Erika and I write over at the other lion. I'm a single mom of a beautiful six-year-old boy, Punkin, who has fragile x syndrome. His diagnosis includes ADHD, a low IQ, autistic behaviors (but not autism), and sensory integration disorder. I also work with preschool children who have special needs.
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Cooking with Punkin should be renamed, "Making something fun to eat while Punkin scurries in and out of the kitchen." It's just like with arts and crafts; you ask him to do it and he protests (loudly). You show him what the activity is and he glances in your direction. You sit down and begin the activity yourself and he dashes over, shoves you out of the way and declares, "I DO IT!"

I downloaded the Starfall Gingerbread man app for his iPad several months ago, and aside from YouTube, it's the most used feature on the device. It teaches shapes and colors by allowing the child to pick what kind of eyes, nose, mouth, and buttons the man should have. Surprise, surprise, when I looked at Punkin's cookie tray (where all of his men are saved), they all looked the exact same.

His interest in the app made me finally decide to use the oversized gingerbread man pan his paternal grandma sent last year. Not being so fond of gingerbread, I made a sugar cookie. Not being so good at remembering, I failed to purchase candy and frosting. So we gave him "CIRCLE EYES! CIRCLE EYES!" with Fruit Loops and buttons with marshmallows.

Punkin loved him, but refused to eat him. The irony of asking him to cook and then eat his beloved friend did not escape me, so I wasn't really surprised when after he saw me break off a hand, he started breaking the entire cookie and piling it up on the cooling rack.

This is the point when I have to decide whether I'm going to be angry about a cookie. Nope. Not worth it. We had fun making it, and my co-workers and I have enjoyed eating it after all of our preschoolers pass out at nap time.And I guarantee that when we make a second gingerbread man, he will remember the first time and be much more attentive.

Punkin is the perfect example of how a child with fragile x syndrome learns. He needs to see the entire process happen and then go back and complete the steps; he needs to know that his work has a purpose. He isn't going to stir some cookie dough just because I asked him to -- he needs to know there's a super cool gingerbread man in his immediate future. As he has developed cognitively, he's been better able to deal with situations like this one because he can attend for a longer period of time and he can process more of what I'm saying. In the past, though, it might have caused anxiety. The anxiety would have manifested itself in aggressive behavior, and I never would have gotten my cookie.

So what are you to do if you have a student similar to my son?

1. Stop worrying about eye contact. As parents and teachers we often  become preoccupied with eye contact. I've struggled with this one personally. Giving people eye contact increases my anxiety and quite honestly distracts me from what they're saying. I'm so focused on the sensory information that I'm receiving from looking at their face that I forget that we're having a conversation. Also, try sitting next to children instead of across from them. It's less intimidating and doesn't imply that you will be demanding the dreaded eye contact.

2. Work on the entire process, not just the pieces. Punkin's former preschool teacher, writer of How Long is this Hall, figured this one out when he was struggling with prewriting skills. He tore paper and generally threw a fit when asked to work on making lines down, lines across, and circles. So she introduced him to writing his entire name. From what I understand, there was an immediate change in his willingness to work; he even began writing letters on his own, sometimes on the wall in our living room.

3. Use visual aids. This might be a picture schedule for the entire day or a specific activity. Sometimes something as simple as a first/then board eases anxiety because the student knows what is coming next. Just laminate any piece of paper and draw a line down the middle. On the first half, offer a picture of the first activity. On the second half, place a picture of the next activity or the child's reward for completing the task. I've found it especially helpful to always have a preferred item be that last picture in a schedule. So if I make a picture schedule for hand washing, my pictures would be turn on water, get soap, rub hands, turn water off, dry hands, go play. Here is an example from my own house of a toileting schedule. I even added a candy bar at the end; this was very motivating! A first-then board might just have the  toilet picture and the play picture.

Open door, pants down, sit on potty, pants up, wash hands, go play.

4. Pair more challenging activities or new activities with ones that are familiar. If you're introducing a new activity, this approach can be especially helpful. Children want to please adults, they want to be successful, and they want their days to be routine. So if you give them something familiar before and after the new or challenging activity, it can provide all of those supports and still give you a chance to work on a new skill.

5. Pick your battles. So he broke the cookie. Eh. If that's the worst thing that happens all day, then it's an awesome day.

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.