We worked with families and professionals to find out about their experiences of the early years of children with learning disabilities. We aimed to find out what worked and ways we could provide information and guidelines for services and families.
Our research disclosed significant findings. For some parents, the disclosure of their child's disability was handled sensitively:
"I was very happy that they told me straight away and it was very matter of fact how it was delivered - she was rather emotionless and she didn't pity me or offer condolences. If someone had offered their commiserations I would have been very upset."
But for around half of the people interviewed, their experiences were less positive. The mother of a five-day-old baby was told:
"There's no beating around the bush, he's got Downs Syndrome".
When another mother of a child with Downs Syndrome asked how her baby was the midwife replied: "You'll know when you see it."
Some parents received enough information. Others received very little and resorted to searching on the internet, a bewildering task. Others received too much information to take in:
"... on the first visit they gave me too much information... it can be too much to absorb. Even if your child doesn't have a disability you're adjusting to your life with a baby... there is a danger of being bombarded."
A wide range of support was offered to the families interviewed, and emotional support was gained from a variety of sources:
partner
Portage, a home-visiting educational and support service
early years centres/pre-school specialist nurseries
health visitor
social worker
other parents
Some found that they received a lot of support from a number of these sources, whilst others received little support, if any. The level of support they received often depended on where the family lived.
The impact of having a child with a learning disability upon the family was different in all cases, but a number of mothers talked about the strain it put on their relationship with their partner, especially during the early days.
Many found it difficult to do things as a whole family, such as going to the cinema or to a museum. Others noticed sibling jealousy as so much time was spent caring for the disabled child:
"Life revolved around the child with a disability and can take the emphasis off the other children in the family".
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