Can I be honest with you about some things?
Isolation happens on a couple of levels. Emotionally, the only person who really “gets” what I’m going through as a dad is my wife. She’s the only one who can give me the support I need.
My parents try to provide support by saying things like, “He’s doing so good; you’re not even going to notice his disabilities by the time he’s 6 years old!” Every single time I want to reply, “You don’t know that. How could you know that? And that’s such an unfair standard to hold him to!”
Similarly, other parents of neurotypical kids just don’t get the stressors, not even the small stuff like all the bills, therapy appointments, the constant thoughts about the future and what it might hold.
The emotional isolation can often lead to social isolation as well. We have friends who invite us places. But every time we get an invitation, we must examine whether it’s worth our time to pack everything we need to go.
And then the question comes about how our friends’ kids are going to react to our son. That makes us more hesitant to get out of the house. It’s a constant battle between wanting social affirmation while also recognizing the level of difficulty to go and get it.
And lastly, I’m tired. Normally, my son sleeps through the night, but there are a few times a week where he’ll be up at 3 a.m., which means I’m up at 3 a.m. Combine that with a full day of work and when I have a moment to sit, I kind of want to do just that—sit and do nothing.
I’ve struggled with this question from the very beginning. How can I have a productive, healthy, social life with these self-imposed boundaries that lead to me feeling a bit isolated and in my own little world? It’s not a world I would ever, ever change, but it’s also not a world that I let many people in to.
Perhaps those of you with older children can give me advice on this, because I know at some point, I’ll adjust and find a way to develop a more productive social life.
I think it’s important for parents to acknowledge the impact our children’s impairments have on us as individuals. Our mental and emotional health is important. If we are not healthy, we can’t serve our children to the best of our abilities.
Perhaps acknowledging that isolation is the first step to conquering it.
There are some things you expect to deal with when your child has special health care needs, but some things take you by surprise. One thing that took us by surprise was body odor.