“Your child has a 16p11.2 duplication, PDD_NOS, and will most likely be intellectually disabled.” I heard these words in February of this year. I don’t think I could have felt worse at that moment. I felt alone as if I were on a desserted island, like no one in the world would understand what we were going through.
According to Laura, a mom of twins who both have developmental delays, “the right support system is a complex one depending the special needs issues you have. Find the support is complex, but what you don't realize until you've developed that support (at least so it seems to me) is the different types of support and places that you can get it.” I became a bit frustrated until I found this group of about 25 women throughout the globe on facebook who have children all with the same syndrome all searching for answers. We’ve exchanged not only information but we are our own little cheering section!
I thought I could lean on family for support but not everyone wants to or can understand what we go through on a daily basis. Unless you are here day in and day out you don’t really “get” Chris’ daily struggles. We have many family members who are older as well and don’t understand that autism can look different in each person who has it.
We have also built a support system through Iron Man’s therapists who work with him. Since he has MANY therapists, it is easy to ask questions of them. Although I did teach Special Education for many years, my expertise is in older kids so it can be hard even for me to know what is “typical” of someone his age and what is not.
Although we’ve only gone through this since February, I feel like we’re getting headway with our support system. What do you do for a support system?