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Grasping the Thistle: The thorny reality of parenting a child with complex needs

Session 
7.04
Personal Experience
  • Claire Hayward (Access to Communication and Technology)
Summary

To relate my experience and learning as an AAC clinician who then also became a parent of a child with complex health and speech, language and communication needs.

Method/Activities/Techniques

After working with clients with complex needs for many years, I am now also a Mum to a three year old son who is deaf and and has a tracheostomy.

Results/Findings

There are many challenges in caring for a child with complex needs. Focusing strongly on communication needs had many positive, but also some negative, outcomes. My son's emerging communication skills increased professionals' expectations of his abilities, and other developmental milestones were led by these language gains. However, some therapies had to be de-prioritised, and fighting for resources was exhausting.     

Conclusions

I challenge fellow professionals not to "wait and see". Parents face extremely difficult choices, balancing therapies and other medical priorities with wider family life. Early support and honest dicussion of the likely pathway to language for children with complex needs is essential. I propose that AAC services front load their support to very young children, re-evaluating the balance of home vs school interventions, more clearly and strongly articulating the long-term risks of language deprivation.

Level of Session 
General
Age Group 
Child