My son Jake has CHARGE syndrome. When Jake was born, he had to spend a lot of time in hospital. The medical professionals we spoke to were very negative about Jake’s future. We were heartbroken. But then an MSI consultant from Sense came to visit us at the hospital. While she was talking to us, she noticed that Jake would turn his head to look at me and would respond to my voice. She was so reassuring and gave us hope for the future. Sense has supported us ever since.
Jake is now 7. He is a very active boy – he loves to run, climb, jump and play. But it is not always easy to find play environments that can meet Jake’s needs. He needs constant watching as he does not have the same understanding of dangers as other children. Most play groups do not provide enough supervision to accommodate this. Also, local play groups for disabled children often do not have staff or volunteers with an awareness of how to meet the communication needs of a deafblind child.
When taking Jake along to play settings, we know we have to be flexible and sometimes compromise, but even then we have found that there are not that many places to choose from. Most mainstream groups or classes for children of Jake’s age are focussed on intensive learning, whereas he needs to enjoy the experience as well as to learn. There are good exceptions though, Jake has swimming lessons every week, where a teacher sings songs, claps and does lots of other things to get Jake to communicate. I know he learns during those lessons, and the learning is done in a way he enjoys and can respond to.
Now that Jake is older, it is much harder to find toys that are both appropriate for his age and level of understanding and give the sensory feedback he is after. He won’t play with toys which don’t give much feedback and books or puzzles are not something he is really interested in. He loves to play with his iPad as this provides lots of feedback.
The best solution for Jake would be to have specialist 1:1 support from an intervenor outside of school hours. To get the most from play, he needs to be in a safe and structured environment and with someone who understands his needs, knows the way he communicates and is able to adapt the activities other children of his age do to make sure he can take part and enjoy himself.
Jake is a normal boy, who happens to have vision impairment, hearing impairment and learning difficulties. He wants to do all the things other children do and although it might take him longer – he will get there with extra support.