4 Reasons Why Networking With Other Parents of Kids With Aicardi Syndrome Helps Me


Through the more than 25 years with my daughter, who is diagnosed with Aicardi syndrome, I have learned that one of the best things I could do to help her is network with other parents who deal with similar issues. In the early years, finding other parents was a slower process; not everyone had access to the internet and there weren’t social media platforms, yet. I found other parents by writing into a magazine that helped connect parents. It’s much easier now as entering a keyword and a click is likely to bring parents together in an instant. Still, it can be challenging to find others in your community. These are some of the reasons networking has proven to be important.

1. In the early years of her life, I had no idea what to expect my daughter to be like and I had many questions doctors couldn’t answer. Would she reach any milestones? Would other children accept her? Were there things I should be looking for in reference to her health? Parent support groups became very important. I found that guidance through the early years came from other parents who had children of varying ages with similar challenges. Anything I asked them was answered with their life experience, and if they didn’t know, they knew another parent who might. In the early years they were an invaluable resource.

2. As my daughter aged and went through the school system, contact with other parents became more difficult; there weren’t parent support groups. Meeting other parents became hit or miss. Schools didn’t make it a priority to help parents meet each other. There weren’t always extra-curricular activities for my daughter to participate in with similarly abled peers, and the parents of more typically abled children couldn’t always help or understand my issues and needs. There were activities on weekends usually with other similarly abled kids in our county, but not always ones that interested or were a good fit for my daughter. Still, when we found other families at these activities there was much information exchanged, emotional support and an understanding of issues faced which can only be understood by someone who is living the same reality.

3. As we went through her late teens and into early adulthood, contact with other parents remained the single best source of information about the processes of obtaining guardianship, transitioning from high school into adult programs or work, finding adult medical professionals, and recreation opportunities. Exchanging information about services and other opportunities open to adults with developmental delay is even more important as we age. Talking to other families dealing with similar issues, and supporting each other is invaluable in avoiding feelings of being alone as we watch our “empty nest” friends going on vacations and spontaneously meeting friends for dinner while we still need to find appropriate care for our adult child before we can commit to invitations. To have connections with others in a similar situation helps when we feel left behind from our peers.

4. As we look to the future for ourselves, our family and our child, it is other parents who have either done it, or are doing it, that help us gather information. Other parents can help us know what questions to ask in residential planning, job or day program possibilities, and financial planning for our loved one. Discussing fears, feelings, and the logistics of our child’s future as we age is more comfortable with those who have the same type of concerns. It enables us to gain some perspective, and think more clearly about what to do, and prepares us to deal with the professionals who will be assisting us.

Through all the stages of our child’s life, networking with other families has been an important part of getting through the tough times, celebrating achievements, and preparing for the future. It has also been a great way to make friends for life for us and our child. When we feel less isolated we can be more effective advocates for our loved one, and happier over all.

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