Communication increases social interaction – Kabuki Syndrome, SLD – aged 13 years

Kibuki syndrome is a genetic disorder. This is a girl with a wonderful sense of humour!
‘The main thing is the mixing with her peers now, not aggravating them. She knows how to mix and has good attention. She is a real comedian and likes a good giggle.’ – Mum

Just a few of the changes since Brainchild:

Communication

  • Speech and communication has got better.
  • At the annual review at school, they reported better communication with other children. She used to aggravate them to get attention. Not now. She is more content and communicates better.
  • She has a great sense of humour. When she was at her Nana’s she said “Thank you for having me, I know it’s been a pleasure.”
  • She is now expressing her emotions which she didn’t do before.
  • She communicates her thoughts and relationships are better. She can now verbalize her feelings and doesn’t get overwhelmed.
  • Elective mutism has improved greatly.
  • She used to say the same thing over and over and over. She does not do this now.
  • She has been moved up a group to be with more communicative children. She has coped well and fits in well with the group. The other girls are chatty.

Focus and concentration

  • Confusion and frustration used to lead to lack of interest or rebellion. This is a lot better.
  • Concentration is much better. She is more patient and perseveres. If a task is set up at school she will complete it, even if she is not interested.
  • Over focusing on details is much less noticeable.

Social interaction

  • She is now mixing well with her peers. She used to be just with adults.
  • She is more compliant.
  • We are pleased she is not as “touchy feely” with strangers as she used to be.
  • She is less likely to invade others’ personal space and be too close.

Independence and confidence

  • She is independent for short periods. She is able to have a bit of time on her own. She used to be glued to mum and dad. Now she will go off into another room and put on music and dance on her own.
  • She will tell mum to go on and do things. She doesn’t need her there. This was not possible last year.
  • She can be alone for 10 minutes or more.
  • She will now go and make the bed and put toys away of her own accord.
  • She will go off and have a bath.
  • Before BrainChild she was not relaxed enough to want to do things. Now she has more motivation to do things.
  • She has good self help skills. She often used to say, ”I can’t do it.” Now she wants to do things herself and says “I can do it myself.”
  • Her confidence has developed.

Anxiety and fears

  • She is a lot calmer.
  • The phobias are nowhere near as severe.
  • She used to have limited facial expression, now she is much happier and smiles a lot.
  • She no longer makes repeated requests not to leave her alone. This has gone.
  • She is not so anxious which helps her concentration, comprehension and she is now good at making choices.
  • She used to have disorientated behaviour. We don’t see this now.
  • She is less emotional now and more relaxed.
  • She is definitely calmer and more relaxed and she will say, “What shall I do when I feel like this?”She can then use strategies.
  • Her tolerance of stress is much improved and there is less anxiety seemingly unrelated to reality.

Aggressive and hostile behaviour

  • Aggressive and hostile and offensive behaviour is past history.
  • She doesn’t lose control or lash out.
  • Aggressive behaviour born out of frustration has improved a lot.
  • Confusion and frustration used to lead to lack of interest or rebellion. This is a lot better.

Perseverance

  • She will persevere with a task.
  • She is more patient and perseveres.
  • She is less distracted in the classroom.

Learning

  • Learning seems easier for her.
  • She is much more able to understand cause and effect.
  • Her reasoning skills have improved and it is easier to reason with her.

Physical changes

  • Posture is upright now.
  • She is now able to use cutlery-just fine. She can also wash up and dry up and tidy up.
  • She used to have a tendency to bend her body forward in anxiety. This is rare and only when she is really worried.
  • Balance and coordination is much better. She is more able to organize her actions.

Overall

  • Her self-esteem is much better.
  • Life has got easier for us all.

Read more in the Brainchild Evaluation of Impact Report