Being parents of a child with Special Needs can be many things; a joy, a struggle, at times it’s heavy, and in a breath can be made absolutely amazing. It can also be extremely isolating at times; sometimes emotionally, and sometimes literally. Many “friends” – and even some “family” – slowly drift apart, or stop calling to say “hi”. You stop getting invited to join in on outings, events, or even conversations.
Sometimes, you even end up having to isolate or distance yourself; you notice energies shifting, side-eyes, or what used to be whole-family invites turn into single-person invites.
Many times, it’s due to a lack of acceptance or understanding – sometimes by choice, and sometimes not.
I myself was guilty of it for quite some time, though never intentionally. You see, for a long time we were not as close as we are now with my sister-in-law, or her amazing son who’s also on the spectrum. While it was never maliciously intended, we have to recognize that we never really went out of our way to make sure she wasn’t lacking support anywhere. We didn’t understand what she was going through, we didn’t grasp the complexities of an ABA or therapy session, nor did we make it a point to pursue and ask.
It’s something I still feel immense remorse for to this day.
Now, after experiencing some of the same circumstances she was handling on her own years ago (like a soldier, I might add), I know some of what she went through. Granted, everyone’s journey is different; no two kids with Autism are the same, so no two families’ journeys are the same. You can go through similar struggles, sure. You can also experience completely different issues but end up in the same emotional place. This truth is only a part of why we’ve become so passionate about advocacy for understanding and acceptance.
Being open and raw about the good times and the tough times are the only way that we can move closer to our goal being achieved. I have been on ‘both sides of the fence’ so to speak; the one who didn’t understand or ask (even thought it was my own family), and now the one going through it, having people come and go from our lives not caring to try and understand, or accept that we just have to do life differently. There’s sometimes an excuse, sometimes people intentionally drift hoping you don’t notice, and sometimes you just realize that certain people drain your energy. It still stings, no matter how many times it happens – but deep down we know why.
Then again, there are these rare diamonds that shine through in the rough times. Diamonds like this lady. This amazing human being sitting next to David, is his SPED teacher from last year – but truthfully she has been so much more than that. She has been a true advocate for David. She has been my voice of reason, my sounding board, and now someone who I can truly call my friend. She is so passionate about what she does that even though she had to take a year off from teaching, she is still coming over to our house once a week to share her expertise with me and to work one-on-one with David. This is so above and beyond, I’m tearing up just trying to explain it.
We are so blessed to have her in our lives. Just in the short time she was here this morning, I learned some things I can do with David to help refresh the things he learned last year and get him back to school speed and ready to learn new things with his amazing school team this year. Thank you, Jackie, for joining our tribe.
To all our fellow special needs parents out there, who feel alone in this journey, and like no one understands, first we say – we do. Reach out, we’re happy to listen. Second, we recommend – find your tribe. It’s not an easy thing to do; it takes work, dedication, and having to watch people come and go from your lives. Especially when it’s family – and it can be – the process is tough. However, the quantity of friends/family in your roster is not important. When you have a true tribe, who accepts you and your family for exactly who they are, the feeling of fulfillment you and your kiddo will experience is priceless.