A few weeks ago I somehow found a new support group for families with a special needs child. I can’t even begin to remember what I searched or what Facebook recommended to me – but for once the recommendation was spot on. I found it – I found “home”.
I belong to several support groups for parents of children who are differently abled – each serve a different purpose. Some of the groups were started by various CP organizations (either local or national), some are more “general” meaning that all kinds of disabilities are discussed/supported, then there are others that are uber specific (i.e. one is specific to Gavin’s talker) and still others discuss devices, where to get them, how to pay for them, new treatments/therapies/surgeries/medicines, etc. While all have great information, none of them have ever felt like for lack of a better word, “home”. I rarely ask questions in these groups and just kinda follow along with what people are discussing. Nothing ever really seemed to fit our situation. Even the CP specific groups somehow feel foreign to me. A number of them are about the disability itself – so more educational, getting involved with local groups for fundraising, IEP planning, etc. But not really “peer support” driven. I’m grateful for these groups because they typically give me place to start when we encounter a new situation, medication, device, recommendation, etc. There are no words to fully describe what it means to have peer support from those that have actually walked this path before.
It became very clear to me as I read through the comments/questions from these parents, grandparents, caregivers and folks living with CP that I had finally found my “tribe”. From what some would consider inappropriate/insensitive comments (but in this community are actually pretty damn funny and spot on) to help understanding a new diagnosis – the out pouring of support and compassion is just amazing. Literally, there are days I read through some of the comments and think, “did I write this and not remember? These people are writing exactly what I’m feeling/thinking.”
While no journey is exactly alike, the fact that these individuals/families have the closest path to ours and can provide tips, tricks and advice to get through most situations is nothing short of amazing. They get it. They get us. There is NO judgment or trying to help them understand the decisions we face/make on a daily basis. This group is supportive and understanding of the numerous thoughts and feelings many special needs families experience – and then feel guilt over. Instead of glazing over it – these folks address it head on; providing guidance and understanding. Many have children who are now adults and remember the “early” years and lack of support and feeling extremely isolated since there were very few local groups and certainly no online groups to offer support. These are the pioneers. These are the creators of this (and many other) “tribes” that help pave the way for us “newbies”.
It’s great to have family/friends to support us along this journey, especially since there are many who have walked away because they aren’t able to “handle” whatever it is they think they have to “handle” by knowing/being associated with our family. But having a “tribe” of people that have literally “been there, done that, got the t-shirt on the way out” makes the journey a little less lonely, scary and dark.
Make sure to find your tribe – they are out there. It may take a little time to find them but it will be totally worth the wait once you do!