Most Wonderful Time of the Year!
Ah, the holidays! It’s always one of my favorite times of the year. Most of the time I was growing up, we had family nearby. When we relocated after I graduated from high school, it became a tradition for my dad’s family to all converge on our house for Thanksgiving, since our house was midway between his older sister in Pittsburgh and his younger sister and parents in Georgia. For most of Thanksgiving break, there were at least 16 people in our 3 bedroom/2 1/2 bath house and it was the absolute best kind of chaos. My cousins and I remember those times with great fondness.
As we all grew up, those Thanksgiving get-togethers became more challenging to pull off. Once all of us kids started getting married and having to negotiate in-laws and such, the whole thing got impractical. As an only child, I really miss those times, and I hoped we’d be able to still get together once all our kids got older.
Family dynamics after children
Before anyone jumps to any conclusions, I want to say from the outset that my family has been fantastic. They’re very supportive and have always been very accepting and understanding of our situation with the twins. X does a pretty good job of adapting to unfamiliar situations, but the twins just aren’t that flexible. They function best in their environment with all their stuff. As a result, we don’t see extended family often. Both sets of grandparents live within 35 minutes of us now, and we’re so grateful for that. But I know that all too often, extended family can cause more problems than solutions.
Roadblocks to understanding
Often, a lack of understanding on the family’s part is simply a lack of information. As autism parents whose lives revolve around autism, it’s hard for us to conceive of a world where not everyone has extensive knowledge and understanding of the way our kids work. We spend day in and day out with trained professionals who know our kids and how they tick. But often our extended family’s only experience with autism only extends to the movie Rainman and Sheldon Cooper from The Big Bang Theory. You’ll hear a lot about how “my college roommate’s husband’s brother has a son with autism.”
I’ve had to learn that a lot of the time, these statements are made in an effort to form a connection. We all know it’s not that simple. We’ve all heard the saying “if you’ve met one kid with autism, you’ve met one kid with autism.” Just because the above kiddo is autistic doesn’t mean that his behaviors, stims, triggers, etc. are the same as your child.
The trick comes when you start trying to educate your family member on what autism means to YOUR kid. Hopefully, they’ll be willing to listen and ask questions. Always let them know that you would be willing to answer any questions they might have about your child. And remember, they may be using outdated or even antiquated language that you might find offensive, like functioning labels or “mentally disabled” or, heaven forbid, “retarded”. Try to remember the context and intentions of the question they are asking. Gently inform them that those terminologies are offensive and tell them what words to replace them with that are acceptable to you.
Ok, that didn’t go so well
Hopefully, answering questions and having a meaningful dialogue will be the result of those conversations with your family. But what if, instead of a conversation, an argument breaks out? Step back, take a deep breath, and remember everything you’ve ever learned about de-escalation and conflict management. Getting into a shouting match won’t solve anything. If you are in a position to leave, inform them that you can see that they aren’t ready to discuss this, to let you know when they can have this conversation in a constructive manner, and make your exit. You may have to find alternate accommodations if you’re staying in their house or make plans to leave as soon as you can make arrangements. (I’ve never encountered this particular scenario personally, but have heard plenty of stories from other autism families.)
At this point, the ball is in their court. And you may have to be ok with the fact that they may never be in a position to discuss your child and their needs constructively. Ultimately, that sort of toxic behavior isn’t something you or your child need to be around. It’s hard, but sometimes you have to cut people out of your life and that includes family. You don’t do it hastily or without effort at reconciliation, but it gets to the point where it’s doing more harm than good, and it’s best for you and your kid to not have that kind of influence in your lives.
Setting these kinds of boundaries is essential, and it’s something I struggle with in my life. I’m currently reading Good Boundaries and Boodbyes by Lysa Terkeurst, and I highly recommend it! (Not an affiliate link, I just really like the book!)
What next?
Making the decision to distance yourself from your family is a difficult and oftentimes devastating decision. The life of an autism parent can be isolating to begin with, and then the feeling of rejection that comes from losing your family is enough to make you put up with far more than you should have to. I would encourage you to seek counseling to help you navigate all that grief and emotion. And hopefully, your counselor can help you find ways to help your child deal with his or her own feelings. I know with my guys, they’re not always able to communicate their feelings to me, and so they end up acting out or showing me in other ways that they’re bothered.
In the meantime, try to find a support group of some sort. Making friends is hard, but you are not alone. There are tons of Facebook groups, some you may even be able to find locally, that are all autism parents in the same boat you’re in. If you’re lucky enough to attend a church with a disability ministry, try to get connected with other parents like yourself. That old saying, “friends are the family you choose” is so very true.
If you’d like someone to talk to right now, don’t hesitate to contact us through the A Break from the Chaos Facebook page. This community is all about supporting parents like you as we all do this crazy life together. I’ll say it again, you are not alone. Reach out if you need to, we’ll be here!
