The following is a resource sheet, the Teacher’s Resource Guide (TRG) which I compiled for Maya’s new teachers to help them better understand her behavior, how she learns, and how to optimize her participation in the classroom. She attends a private school and Miss K. is her teaching assistant/aide. Her primary teacher has more detailed information about how to make specific adjustments in the classroom to support Maya’s learning.

What you choose to include in your TRG may differ depending on your child’s age, specific needs, whether he/she attends public or private school and their specific policies and procedures. Even if your child has an IEP (Individualized Education Program), it may be helpful to offer teachers some highlights and reminders about your child and written from his or her perspective. Perhaps you will even get some new ideas about what to include in your child’s next IEP.

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Things to know about including Maya S. in your classroom:

Dear Mr. or Mrs XXXXX,

I have a condition called cerebral palsy. The areas of my brain involved with muscle control and coordination were injured when I was an infant. Cerebral palsy affects people differently. In my case, both of my arms, legs, and trunk, are difficult for me to control because my brain sends confusing messages to my muscles. Sometimes it sends messages to them to tighten or to loosen, but often not at the right times or to the right degree. In addition to difficulty with movement, I have some other conditions to consider which may require additional planning and/or support in the classroom. Please remember that having cerebral palsy does not define me, but it does require some additional thought and planning go into my day. Miss K., my teaching assistant/aide, is available to offer insight and assistance in the classroom whenever you or I may need it.

1. Slow down and wait for me!! Slowing down is one of the most helpful ways to help me remain included in class activities. Whether it’s a physical, academic, or social activity, slowing down gives me the chance to organize my thoughts and my body in order to stay a part of the group. Also, when you ask me a question please give me extra time to respond. I am very in tune with my surroundings and I listen carefully when people speak to me, but I often need extra time to respond.

2. I turn away in order to tune in. Very often you may see me look away from you when you are speaking. This doesn’t mean I am not paying attention, nor is it intended to be disrespectful. In fact, by turning my eyes away and turning my ear toward you, I am often trying to focus in on what I am hearing by limiting the visual information I need to process at the same time.

3. I cannot recognize faces. Although I may know you or my peers and have seen you many times, please tell me your name outside of the classroom. You can say something as simple as, “Hi Maya, it’s Mrs. Hart.” I have a condition known as cortical visual impairment or CVI. This means that the part of my brain that processes visual information needs some help breaking down and sorting through visual traffic. It also means that I often don’t recognize people’s faces and I often use context, hairstyle, jewelry, hair color, and voices in order to figure out who is speaking to me. I may get confused if your hair is different, or if someone has a similar style and color as your own. To read more about CVI visit the CP Daily Website: https://cprn.org/cortical-visual-impairment/

4. I have epilepsy. I take epilepsy medication outside of school in order to control seizures. I also carry emergency medication. Miss K. (my teaching assistant/aide) is responsible for tracking and administering this medication in case I have what is called a “break through” (breaking through the medication barrier) seizure. I don’t have seizures frequently, but if I do, have one someone will need to call 911 immediately. Miss K will attend to me and please have my friends leave the room if possible. I will often not be able to communicate until after the seizure stops and I will likely be groggy or sleeping afterward.  Mom has provided a handy list of do’s and don’ts if I have a seizure. Please familiarize yourself with this information.

5. I have a strong startle reflex triggered by fear of noises or in response to something I perceive as threatening. When this happens I often push back in my chair, blink my eyes quickly, and tighten my muscles. I also may drop whatever I am holding. On occasion it may cause me to cry. It’s no very different from your own behavior when you are startled, but my nervous system is more easily triggered to protect me.

6. Please talk to me AND Miss K. before approaching my body or trying to take me out of my wheelchair. It’s tempting to want to try and make adjustments to how I am sitting etc, and I know you are trying to be helpful, but this makes me uncomfortable and invades my personal space. It also may on occasion be unsafe since I have difficulty maintaining my balance. I may appear stable one moment but may unexpectedly lose my balance for no apparent reason. If it looks like I may need assistance, please speak with Miss K. and have her help me.

7. Sometimes I may more easily lose my temper or become upset when I don’t feel well. Having cerebral palsy and epilepsy causes me to feel some strange and uncomfortable sensations like headaches, dizziness, and other aches and pains throughout the day. It’s a part of my condition that I am learning to accept.I am working on focusing my mind on other projects and my schoolwork but sometimes I get overwhelmed with what I am feeling physically and this makes me more susceptible to losing my temper. It usually helps me calm down if you ask me what is bothering me and give me a few minutes to process and express my feelings.

8. I want to do what my peers are doing whenever possible. Miss K and Mom are available to help you with thinking through and approaching lesson planning so that I am thoughtfully included in class activities. I am a kid like any other and wish to participate and be involved with any activity they are doing. Give me a chance to do something on my own. If you are unsure what is a reasonable challenge for me ask Miss K. I will on occasion let you know that I don’t need help.

Sometimes including me in activities takes creativity, prior planning, and patience. Sometimes simple positioning adjustments, moving my chair to another part of the room, or slowing down the speed of an activity makes a huge difference in my ability to participate. Again, please feel welcome to talk to Miss K. and Mom and bring forward any questions you may have to help me participate more fully and comfortably at school.

9. Food-

I have a few dietary restrictions. If there is a special treat offered in class please check with Kelly about whether I may have it. Also, Mom is happy to provide a substitute as well.

Since I am often fighting to control my muscles, I may become hungry more frequently than my peers. Although I don’t wish to disrupt my teacher and classmates, on occasion I may need to briefly leave the classroom for a quick snack.

Please feel welcome to contact Mom to discuss any concerns or questions you may have. She also runs a website called CP Daily Living where she shares our experiences and provides educational information about cerebral palsy.

Sincerely,

Maya

Mom’s contact info: Michele S. cpdailyliving@gmail.com Website: www.cpdailyliving.com