I often think back to the day we got The Boy’s diagnosis. The ex and I went our separate ways – he went back to work, and I drove to a nearby Kmart parking lot to process (i.e. cry my eyes out, hyperventilate, ask myself over and over “What are we going to do?” and eventually call a close friend to talk me through it. Thank God for her.) The psychologist we had seen had written “Autism Society of America” on the back of a business card, suggested we look them up, and said goodbye.
Once I collected myself, I still didn’t know what I needed, or what our next steps were. As I think most do, I went to the internet. Unfortunately, the internet is a big place, and I’m not sure the right tools and support are readily accessible to someone doing their first post-diagnosis search.
So how can we support parents who are new to this whole kit and caboodle?
1. Support local nonprofits that directly help our kiddos. The more those groups are supported, the more visible they can be in the community, and the more likely it will be that someone hearing that diagnosis for the first time will recognize the group as a resource they can use. This means supporting them with money, with attendance at events and workshops, and with your volunteer hours. Yes, volunteer hours. It may seem like we have the perfect excuse not to volunteer, but we have to give back if only to our own community – if we don’t, who will?
2. Make your presence known at the school. Kids with a new diagnosis will have parents with questions. They will most likely be asking those questions at the school. If you have maintained a good relationship with staff while dealing with the school, they may just see you as a resource for parents who are new to this whole shindig, and may pass your name along. Or if there is a group of you parents, even a social group, that goes for you, too. Schools really do want to help, and may attempt to connect someone with questions to those who may have answers (that’s you!).
3. Use social media to post “the good stuff” to your friends, and encourage them to share it. Parents who have questions will inevitably be some of your friends, or friends of friends, and so on. The more “the good stuff” gets shared and posted, the more people will see it, the more it will be found by those searching for it. That’s how the interwebs works for good.
4. When they come to your group, be welcoming. You may think this goes without saying, but groups are a funny thing. Sometimes, a group can get an attitude with newbies, and can be judgmental. You don’t have to like everyone who comes to the group for help and support, but the fact remains they need help (and they may need more help than others!).
5. Respect the process. People react differently to the news of a diagnosis. Some will immediately seek out others for help, while others will remain private and need to sort through things on their own. Don’t be pushy. Allow them to come to terms with it, and just be a friend. Just knowing there are others who are going through what you are going through goes a long way, especially at the beginning.
Special needs parents have many, many roles. One of them should be “guide to others who have just joined the group.” What would you add to this list?