Well we tried speech therapy for two months, the speech therapist was great, she communicated well, even sent me messages through Whatsapp with tips and advice on what to do between weekly sessions. Unfortunately, she couldnt build up rapport with her little student. After so many sessions, we decided to give it a break for a few weeks to try to work on her behaviour.
After talking with Alicia through facilitated communication, we realise that she is feeling very angry and upset at herself. She told me that her disabilities are not improving fast enough and she is frustrated at the time it is taking her to get better. She feels lazy for not trying to improve…. As you can imagine my heart sinks when I hear these words typed out on the board.
For your child to say these things when you know you are completely powerless to fix the problem is devastating for you as a parent. After all, we think that we are the ones worrying so much about their future, assuming that they will always try their best to get better. Somehow it didn’t cross my mind in her earlier years that she would say to me she is lazy to try to get better. I was not surprised to hear this from her, but rather more saddened that she was also experiencing the same pain as I was going through.  Are we selfish as parents thinking that we are burdened with this worry, when in fact sometimes we fail to realise that it is not us with the disability, it is the child we care for. But it was very clear through her Facilitated communication that she was burdened with this challenge of getting better and her frustrations were probably magnified a million times over mine.
We asked her what is getting better and what does it mean to her, she replied – Just getting better and being normal. So we explained to her that it takes time and you must look at the small improvements that happen each week, like how you learned to dress yourself independently recently, such a wonderful achievement, and how you can run consistently for 4 kilometers every day. Being able to do even these things which you could not do before are an amazing miracle. Sometimes improvements take time and you have to try to be patient. You can not expect to talk immediately after having a few sessions of speech therapy.
She took all this on board and thought about it and her response was positive. She said she wanted to try and improve and get better and will try to give more love to everyone instead of feeling angry.
Solution!! – Now our challenge is to spend the days or few weeks ahead talking to her through FC sessions about how she feels and try to talk through her fears and worries. My partner is doing an amazing job at talking to her, she is better than me in many ways at communicating with her for long periods. She definitely has more patience than me! One conversation is simply not enough, we need to have constant conversations with her and discuss in length each day how she feels and try to overcome her fears and worries.
I decided to stop her program for two weeks at least and try to focus all our energy on her behaviour, she is becoming very anxious in many situations, unlike before. At home we have been having periods where she cries a lot over pretty much anything that she either wants or can not do.
Having facilitated communication is a blessing to us, If you have a non verbal child, you must focus first on having some form of communication. It does not matter, whether it is picture cards, words in a box, a piece of paper with yes or no or a full alphabet letter board. YOU MUST have some form of communication as early as possible. I can not stress this enough to you –Â a conversation with your child can not be one way, there must be two way conversation back, otherwise how will you know that he/she understands what you are saying?
More times than often there have been words she did not understand the true meaning of, even words that she used to communicate back to us.
