Increased understanding – Kabuki Syndrome, Spina Bifida & SLD – aged 13 years

“She now has a willingness to have a go” 

The program has opened a window to us when we had no windows open. The small part we have covered is just a beginning. We just needed to know what to work on.”

Mum’s list…

Just a few of the changes in our daughter:

• She has developed the ability to make sense of things.
• Understanding has moved on considerably. It used to be minimal.
• She now tries to have a conversation, for example, I say her sister is going on holiday and she will say aeroplane to continue the interaction.
• She is better at following instructions.
• She is more inquisitive. Although she still gets anxious in strange situations.
• Her concentration is better. She will spend time looking at a book and pointing. Excellent on a computer.
• She is more independent, more sensible and aware of the concept of responsibility. We don’t have as many concerns. She can dress herself now.
• Before BrainChild we had to watch her 24/7 – now we can just keep an eye on her.
• She is much less anxious. She is calmer. She is happier. She will persevere more.
• She copes better with life and stress.
• She is much quieter and calmer. We can leave her and she is not as destructive.
• We had outbursts most days. Now she tends to have an outburst once every few weeks. They will only last an hour.
• She was aggressive, particularly with our middle daughter. Now she will cooperate more.
• She had a fixed body position and did not move her head in relation to the rest of her body. Her head is now more flexible and she looks more relaxed. She is more upright.
• Walking and posture is more fluid. Her gait was typical of a two year old. Her shoes used to wear badly on the outside edge. Not now. This has affected and improved her walking.
• Her fine motor skills have improved. She will use the keys on a computer to write her name.
• Sleep was a major issue. It is better. She still wakes at times but will now go back to sleep. She used to wake at 4 a.m. and stay awake.
• She is now going to bed of her own accord. She volunteers to go to bed. She settles very quickly in bed. She is so much better now. It’s much more peaceful.
• She used to be a scavenger. She would eat anything – such as raw sausages. In the last few months, her weight has been controlled by using a smaller plate and she has lost weight and improved her mobility.
• She would eat food from everyone else’s plates as well as her own. Now she will sit at the table, eat her meal and she is fine. She doesn’t overeat now. We can eat out!
• Toileting has improved because she will now ask for the toilet.

Read more in the Brainchild Evaluation of Impact Report

Strike a chord with you? Experienced similar things with your child?

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