Philip has made good friends with
Ila, a girl from Italy who has cerebral palsy.
They correspond back and forth and have even guest blogged for each
other. You can read more about Ila and
adventurous life on her blog Ila’s Crazy Thoughts.
Hi Philip,
I have another
question for you. Last year I went to a summer camp and there was a nonverbal
kid. He used a letterboard but it was very hard for him. Sometimes I wanted to
talk to him but I felt like I would force him to use the letterboard and I
didn't want to because I could tell it was very hard for him. What should I do
next time I am in a similar situation?
Ila
To Ila,
Thank you for writing me. I am your
friend. Lots of advice I have for you.
My experience is that I get anxious when
writing with people who are not practiced in using the letterboard at
first. I need practice with each new person who holds my letterboard. You can
make me comfortable by accepting my anxiety by being understanding that it is
hard for me to coordinate my finger to point the way I want with someone new. I
am meaning to try my best but my anxiety may get in the way. It is meaningful
if you can keep trying until I get it. I like seeing you be patient and not
give up when I make mistakes or can't move correctly yet. People often give up
too easily when I don't succeed right away with spelling. Then limits are
placed when people have to communicate with me because they are dependent on me
having an interpreter to go between us. If only one person takes on the
role of helping me, this can cause strain on the person always helping.
People should not be afraid of trying and failing at first. Learning
to communicate with others is important. Love will make people respond
better. Lines of communication open when anxiety is lower. Patience
prepares me to peacefully deal with pressure to perform. I am much better
making friends with calm and assertive people. I am so able to stay focused
with someone who is more assertive. Accessing my thoughts to spell is hard
work. But it is worth it.
From, Philip
From, Philip
Philip using the letterboard with Big Sis Ana
Thank you Philip! I am very happy you are my friend and you always answer my questions.
ReplyDeleteLove, Ila
Dear Philip & Lisa,
ReplyDeleteFirst of all I want to thank you so much for sharing your story through your blogs!
My daughter shares so many similarities with you Philip. She, too, has sensory issues and a very hard time making her body obey her brain. She was 3 years old before she could even sit up on her own and nearly 5 before she could walk unassisted. But like you, she has persevered. She is now 15 years old and our biggest roadblock is and has always been communication. She can not speak either but I believe that she deparately wants to communicate. Due to being extremely farsighted, sign language has not been successful nor are the picture communication boards. 5 years ago, I saw a video of the Soma RPM method online. Financially, I was unable to get a personal class for her but I attempted to try it with her myself. It seemed to frustrate her so we didn't keep it up.
However in reading your blogs, I now believe we gave up too soon and we are going to try again. I would deeply appreciate any advice you could give me on how you timed your sessions, what you would suggest for material, when to graduate to letterboards etc, (if you have the time). You are both such an inspiration! Thank you again.
May God continue to bless you both!
Britni
Hi Britni, I was just reposting this blog and realized I never answered your question. I'm so sorry! I know it has been over a year, but hopefully you will still get this response. I do hope you return to RPM. The beginning stage is the most difficult because you both have to develop the tolerance of starting a new routine and working through the difficulties. I would use a timer to start with 10 minutes a day. It is common for kids to protest in the beginning, but remind yourself, it is only 10 minutes. The reason for protest may not even be what you think. My son expressed he would want to work, but his body was not cooperating the way he wanted it to in the beginning and that is why he would act out. As you persevere in these initial stages, it does get easier and proficiency does happen! For curriculum I would suggest something age appropriate. Old fashion encyclopedias or the website www.ducksters.com give just enough information on a variety of topics people should know about (ex. everyone should know how day and night work, the solar system, influential figures in history etc.). You can do letter boards right away. What I did to transition Philip from choices to letterboard was have him copy spell the choice he just made. After awhile you can fade out the choices. Hope you get this! Again, sorry for the way long delay in responding.
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