I’ve spent an awful lot of time thinking this weekend. Sunday morning, after Little B had a meltdown at church, and we had to leave, the first episode of self-pity struck. This fell on the heels of being told during a completely unrelated argument with a close friend that I prefer to have people wallow with me, instead of offering encouragement, and it hit me hard, right in the gut.
Before Little B was diagnosed with PDD-NOS, and even just after, I spent hours on the internet looking for answers. Everything I read was either very clinical, or very flowery. The sites that listed symptoms all listed the same things, over and over, and it was very difficult to paint a picture of an actual child from those lists. The sites that were dedicated to “awareness” or whatever had smiley happy photos of parents and kids. It was very confusing to me. I was lost. I was alone. I couldn’t understand how that laundry list of symptoms affected an actual child. How often did it affect them? Was it constant? How did the parents know anything was wrong? Where did they go for answers? How did they get people to understand?
There’s a lot that I’ve learned since that time. I’ve learned that there are plenty of people out there in the same boat I am. And was. There are people who are looking for answers about their children. They are likely confused and feel isolated. At the other end of the “spectrum”, there are people who feel confident that they know all there is to know about their child’s condition, how best to handle the outbursts, the meltdowns, and their own emotional reactions to them. There are people who have come to terms with the idea that their child cannot be “fixed”, because he or she isn’t broken. They accept that. They are strong and determined to make their child’s life the best it can be. They build on their strengths instead of lamenting about their weaknesses.
But not all of us are there yet. There’s a process to this thing, I’ve learned. There’s confusion. There’s pain. There’s grief. There’s acceptance. There’s community. There’s support. There’s power in numbers.
But there’s always fear. There’s always uncertainty.
I have not chosen to share this journey that my family is on with all of you because I am holding true to my tendency to “overshare”. It’s true. I tend to be a person that just straight up tells you what’s going on in my head. It’s not always a pretty picture. But it is my truth. Sharing that with my friends and my family helps me work the kinks out. To take my truth and meld it into what the reality is.
No, I’ve consciously made a decision to share this journey with you because there are others like me out there. They likely feel alone. They likely feel like they are the only people on the planet who have challenges with their child who has this diagnosis. They have days when they find it just too hard to accept things for what they are, and they wish for something else. They find it very unfair that their child has to have such challenges in exchange for the benefits of their disorder, no matter how wonderful they are. They feel guilty about these feelings. They know that they have been given a gift. But that doesn’t make them perfect. But it does make them human. Maybe reading what I’ve written in these words makes them feel better, if even for a moment.
I’ve also consciously made the decision to share because it helps me sort things out in my head. I told a close friend the other day that it’s so easy to forget how bad things can get. Little B has been on medication for about 4 months now. There are definite benefits to this. But it’s easy to forget, when you go a whole week without a meltdown, how bad the meltdowns are. It’s easy to think that all of a sudden he no longer has a problem with certain situations. And then, out of nowhere, it hits. And you think that it’s worse than it’s ever been. But I have this blog that I can go back to any time in the past one and a half years, and see how far he’s come. How far WE’VE come. Together. And it gives me a sense of hope. And hope is everything. Even Little B knows that.
I can see now very clearly that one of the biggest keys to Little B’s success is whether I can control my emotional response to his meltdowns. I know that, logically, in my head. I have seen the power of my remaining calm, and giving him a barometer against which to measure his own emotions. If chaos begets chaos, then there is no end to it. But this is hard for me. It’s very hard. But I am trying. And I am getting better at it. And so is he.
I am blessed beyond belief. And there are days that I recognize that and am so grateful. There are also bad days, when I have trouble seeing past the immediate emergency. To express that weakness to you doesn’t make me a “wallower”. It makes me human. And I hope that it makes you feel more human too.
I hold no ill will toward the person who said that to me. We have a strong history, she and I. We’ve been friends for over 20 years. She simply can’t understand what it’s like to walk in my shoes. What it’s like to live this journey every day. And because I love her, I am thankful that she doesn’t have to.