Friday, December 9, 2011

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.

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.


  1. Erika. I am so thrilled to have your participation here, mixed in with our varied contributors. Thank you so much for your candid and insightful look behind the scenes with Punkin. You are doing such a service by sharing from both your love and expertise as to how we might best support children with 'a-typical' skills and approaches to learning.

    You also have a significant voice in how we can support one another by sharing such experiences. Thank you for your willingness to participate.

    Debbie Clement

  2. Erika, thank you for sharing! It took me back to when my daughter was that age---in both the cooking/activity experiences and your decor.We used to have picture schedules all over the place! And your right~ picking your battles is key! :)

  3. Some wonderful tips there Erika & we know they're efective because you have intimate knowledge of your child & the processes that go into creating success for him.

    I also think it's beautiful that Pam doscovered a new strategy for you. It just goes to show that if we as professionals work with families, who usually are the most informed & knowledgeable of their kids, then there should be far more success stories such as thos you shared witth us here.

  4. Awesome post, Erika! You did a wonderful job of educating about fragile x syndrome, and I really appreciate your suggestions. You post inspired me to start a Special Needs Pinterest board at


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