Project April, Part 1

I’ve been whining a lot.

Ok maybe not. But it feels that way. Since we launched our gofundme campaign a little over a month ago, I’ve spent a lot of time explaining why we need help.

And it has felt like whining.

The truth is that in the past year or so, we have had our world turned upside-down.  But now, it is beginning to settle a bit. Granted, it has settled squarely in the upside-down position. But our lives are becoming more predictable, and we are starting to understand our “new normal.”

This is where the real work begins. Our lifestyle is not working for us. Not legistically, not emotionally, not financially. So we have started to make we changes, and we invite you to watch as we implement them. Today’s video is “before.” This is what I was trying to make work. And we just kept ending up with a mess in our home and a withdrawn bank account. As you’ll see, the lifestyle itself would probably work for most families. But. That’s why they call them special needs. 

Here’s Project April, Episode 1.

This is part of a series of blogs chronicling what it’s like living with a child with Mood Dysregulation Disorder. A gofundme campaign was established to help us cover some expenses incurred over the past year. If you are interested in learning more about our story, please follow our Facebook page. 

It’s why they’re called “Special Needs”

This is part four of a series about raising a child with mental illness. For more about our story, you can go to our Facebook page.

I’m writing this from our living room floor. My daughter’s head is in my lap. We started trying to wake her over two hours ago. School is 45 minutes away, and started 30 minutes ago. She hasn’t been there since Friday. It is now Wednesday.

I have no idea why this kid is so tired. She goes to bed early and has even had a few mid- day naps.
Maybe it’s the moon. Maybe it’s the time change. Maybe it’s the fact that even though she is not quite 8, she is starting the early stages of puberty.

Whatever the reason, I cannot wake her. And if you have a neurotypical child, that is probably hard for you to understand. You probably want to help by giving me all kinds of advice.

“So then wake her up!”

“She needs to go to bed earlier!”

“Have you tried melatonin?”

“Have you tried natural alarm clocks? How about a salt lamp?”

“Splash some cold water on her!”

“Tired or not, going to school is not a choice!”
Look. When you put your stuff on the internet like my family has decided to do, you get unsolicited advice. We knew this going in. We decided that since our story might help others, we would put it out there anyway, and just deal with the advice. And I know people mean well. I know they want to help. (For the most part. I do believe there are people out there who want to point out how they live their lives because if only we did what they did, we wouldn’t have these problems. I understand the safety and security they must find in that. But we’ll put those people aside for now.)

To the people who are just bursting with the desire to give advice. To help. Please listen.

You are not helping.

You are, in fact, making it worse.

As a mother to a child with special needs, I already spend my days wracked with guilt and worry and feelings of inadequacy. When you offer advice, you say “here is a thing that might work for you!”

I hear “here is another thing that you are not doing properly or do not have the time/ money/ energy/ emotional resources to do.”

You say “I could fix this.”

And I hear “because you are failing.”

And of course this is not what you mean. Of course this is my own stuff. I know that. But this unsolicited advice gives me one more demon to fight every day.

There are some exceptions to this, naturally. We have lots of experts (teachers, doctors, therapists) in our lives who know our situation well and give us advice all the time. We have friends who have been in our home and who see our lives first hand. They sometimes offer suggestions. Family advice is always welcome, even when misguided or just flat wrong, because family. I’ve also gotten messages from people I know who are doctors and nurses and mental health professionals. And from other parents who have children with similar struggles. All of these people have some level of knowledge and understanding. And even though their advice might still knock me down for a bit because that’s my own stuff, it is still welcome.

But for the others. The people who don’t understand what we’re going through. Who don’t understand how it has gotten so hard that we have asked for help while we make long-term plans and changes. Who don’t get why we need a gofundme campaign right now. Who don’t get why we can’t keep our home clean. And who feel the need to suggest that we need a different kind of help than what we have asked for. I get it. But please stop.

And I say this not just for my family, but on behalf of all of the people who have reached out to us privately to tell us they are going through the same thing. If you have someone in your life who is raising a child with special needs, there are things you can do to help. And there are things that are less helpful  

Let’s take a look.

Helpful

I brought you this meal!

Less helpful

Have you considered eating in this very complicated way that takes hours and hours of planning and prepping every week?

Helpful

It’s a beautiful day! Let’s go for a walk.

Less helpful

You need to take better care of yourself.

Helpful

I’m coming over to clean your kitchen.

Less helpful

Let’s have a play date! Your place?

This is in no way meant to suggest that all families with children who have special needs are looking for help. I am hopeful that as we learn more about our daughter’s condition and adjust our lives to what she needs, we won’t need this kind of help either. But in the meantime, please trust that we know what we need.

%d bloggers like this: