While your first priority is looking after your child, it is extremely important to ensure that your own needs are met. MAE is a very stressful condition to cope with and fight, and you’ll need all the help you can get. If you ever feel that you are not coping, don’t be afraid to seek help and support for yourself. Here are some important avenues for support:
Professional – neurologists, epilepsy nurses, specialist therapists eg. speech / occupational therapists, teachers. It is important to establish a good working relationship with these individuals who should have a reasonable understanding of what you're dealing with on a day-to-day basis. They will have many useful suggestions and strategies to help you, your family and your child. You need to feel confident in the competence and approachability of these professionals who are responsible for your child's care and development.
Your local and national epilepsy organization is there to provide you with help and support, offering services such as epilepsy education, advocacy assistance, specialized library, and linking you to support groups in your area. Visit our locality guide to see what's available in your region.
Internet support groups – online forums are a tremendous and invaluable source of support where you will find people who've walked in your shoes, been there and done that (or are still doing that). Because MAE is rare, you may never actually meet another family living with the condition, in person. Thanks to the internet, you have the opportunity to correspond and converse with many parents living with MAE. Please get in touch with us! http://health.groups.yahoo.com/group/doosesyndrome/
Family and Friends – those closest to you will also be affected by the diagnosis, and may at first be unsure of how to relate or react. Don’t be afraid to approach them, however, and give them a chance to share the load. Refer them to this site so that they can find out for themselves more about the condition.
Counseling - you may find yourself overwhelmed, struggling to "keep it together" or perhaps you might just need someone to talk to. A professional counselor can help you find ways to cope with the difficulties you may be facing.
Others – people from your place of worship, local support groups for parents and carers, etc.