Providing constant care and supervision to a child who has a chronic disease such as aromatic l-amino acid decarboxylase (AADC) deficiency can be mentally, physically, and emotionally draining. Respite care may be beneficial for you, your child, and your family.
What is AADC deficiency?
AADC deficiency is a rare genetic disease whose symptoms can include sudden cardiac issues, oculogyric crises, seizures, pain, and problems with breathing and blood pressure. Patients may also have trouble sleeping and swallowing, and because the disease causes developmental delays, children may need orthotic braces to help with walking.
What is respite care?
Respite care is when someone other than you looks after your child for, say, a few hours during the day or overnight. It can also be for longer periods, like a few weeks. You might use such care occasionally or regularly. Your child can be cared for in the home or elsewhere.
With in-home respite, the caregiver might stay at home with your child or take him out, perhaps to a park. Center-based respite is when your child goes to a center on given days to be cared for as part of a group. Such centers or clubs often offer activities and outings.
There are also after-school programs that offer fun and inclusive activities for school-age children. Ask whether such programs could accommodate a child with AADC deficiency.
How can respite care help?
While it can be difficult to take a break from caring for your child, doing so is good for you, your family, and your child. It gives you a chance to recharge and take care of yourself. Ultimately, this will allow you to better look after your child.
You could catch up with friends, exercise, take a vacation, go out for dinner, or just enjoy a full night’s sleep. If you have other children, you could use this time to focus on them.
Not to be overlooked, respite care is also a break for your child with AADC deficiency. Their usual routine can be relaxed, and they get the opportunity to do something different. This promotes new skill development and independence.
Where do I find such care?
There are respite care services that you can contact. Perhaps your child’s clinician, or a patient support organization such as the AADC Trust can help with a referral. In the U.S. and Canada, private respite care programs can also be located via this ARCH National Respite Network site.
Or you might arrange care informally with family and friends while you go out for the evening or attend an appointment. You also may wish to look into community recreational offerings at local libraries or clubs. Just make sure they’re able to accommodate children with special needs.
Your options largely depend on where you live, your child’s age and needs, and what you hope to gain from respite care. Because formal services often have waiting lists, it’s a good idea to plan ahead.
Last updated: Nov. 25, 2020
AADC News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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