Living with a CASK gene mutation is challenging and most families will require additional support
Portage – giving additional support through play
Certain counties have a Portage service offering additional support. Portage is a home visiting service for pre-school children with SEND and their families. It works with families to help improve quality of life for the whole family. It aims to minimise the barriers that confront such families. The Portage service varies from place to place, but often manifests as play therapy for the child and helpful advice. Ask your health visitor or GP if Portage is available for your child.
“We looked forward to the fortnightly, hourly visits where our daughter would be entertained and stretched, and we would be inspired and reinvigorated. Our Portage lady was also an invaluable source of information when it came to schooling and the dreaded EHCP and always championed our cause.”
Home-start – additional support for caregivers
A charity that helps local families who are going through difficult times. Families are assigned a volunteer who visits weekly to help out.
“My daughter was born just three months after my father passed away from cancer. Getting her diagnosis whilst still grieving for my dad was the hardest thing I have ever been through. Our Home-start lady provided emotional support and a helping hand when life was overwhelming. She made a terrible situation bearable and I gained a friend at the same time.”
Hospices – offering respite
Some hospices offer “at home respite” which is where a member of staff comes to your home and occupies and entertains your child, giving you that much needed break. If you are eligible for hospice help then investigate if at home help is available.
Direct payments from the council
As a carer you may be entitled to receive a personal budget after having a carer’s assessment to see what might help make your life easier. The money can be used to pay for carers to come into the home to help care for your child.