Often when we are in a group of friends and colleagues, the conversation naturally turns to kids. I hear things like, "Let me tell you what my teenager did...". "I can hardly wait until they are out on their own, then they will learn".
Or even better, the look at us followed by the words, "your kids are older, you know what I am talking about".
This is often followed by a blank stare and nothing more. Because no, I don't really know what you are talking about. As parents of kids who have been perpetually challenged, the reality that most parents face, is not ours.
We still live in a world that many in our situation will always reside. A world of our child's naïveté, and child-like, teenage angst, in adult bodies, and the continual education of our kids to help them learn and understand. The teaching, and re-teaching and the same message delivered ad nauseum trying to instill knowledge in your kids. And the constant advocating to ensure they don't fall through the cracks.
No matter your walk in life, the continent you live on, the economic strata you wade through, as a parent you want to see your children grow up safely, learn independence, and become someone who is successful in their walk of life.
Once done and achieved, you can relax a bit, put some focus back on yourselves and the hopes and dreams you have as individuals and couples. You can focus some of your finances back on yourselves and your retirement plans. Hopefully, your adult children accept you into their lives and a new kind of relationship can be established.
But that is not the reality for parents who have children with challenges. When your friends talk of that "utopia", you nod and smile wistfully. And your friends don't understand.
They don't see you late at night, trying to talk your adult son out of unfounded medical fears because he doesn't understand and his fear keeps him from sleeping. They don't understand the concern you live with when they call you up in a panic because they missed their bus connection and cannot reason that another bus is on the way and you are scrambling to get them home before they lose their mind.
And especially they cannot understand your drive to earn as much as you can now to ensure that your kid's financial future has a chance of survival, given the lack of opportunity our world has for adults with challenges. So you work and worry, and sleep poorly with that worry, lest something should happen to you before you have enough to help them survive on their own one day.
It is a life most will never understand. You will face derision and exclusion for your solitude and focus. You will feel misunderstanding for your continual state of tired and your need for "some sort of down time" to focus on you for just a few hours.
And yet, one thing parents of kids with challenges will experience that others may not, are kids that will always want you in their lives at some level. Kids who still want to give you a hug, as a teen, as an adult. Kids who aren't afraid to say "I love you Mom and Dad" and mean it the same way they did when they were five.
If you know someone who has children with challenges, try to understand the world from their point of view. Be cognizant that their future is different. And if you are in the situation of being a parent with children with challenges, no matter the age, embrace what you have that others do not. And do not feel guilty because you sometimes are frustrated, or saddened, or angry. Do not feel guilty for doing the best you can with your circumstances.
Do your best to surround yourself with those who will work to understand your situation and accept you as such!