Dear friends and family who don’t know that my child has special needs,
Special needs? Are you surprised? Yes, not every disability is visible.
I know you won’t really understand why we chose not to tell you, but it was our choice. A big part of that choice is because people don’t usually understand different. You see, our daughter processes the world differently. She has Sensory Processing Disorder.
Sometimes the environment actually hurts her. Clothing is really a challenge, that’s why in the middle of winter when it’s 20 below she wears a short sleeved t-shirt because long sleeve shirts feel painful on her skin. And if you wonder if she’s cold, she isn’t her body doesn’t recognize and regulate temperature typically. That’s called interoception and interoception has made a real mess of our family life. It makes her have a really hard time sleeping and recognizing when she is full when she eats.
I know you try to relate to me waking up at 2 am with her, but you don’t really get it. You see we’ve had very little sleep in 5 years, you’ve missed the absolute nightmare it is trying to get her to fall asleep. What you don’t see is her little body not being able to be still. You don’t hear her crying that she is so tired but that it is just too hard to fall asleep. Her body won’t settle down.
I know when you see my child you might just think she is wild as she is constantly moving. It’s called Sensory Seeking. It’s her body trying to find her space in the world. Her body doesn’t register her muscles or movement like yours. Her body is searching to find something that makes it feel right. So she moves constantly and it doesn’t stop…EVER.
I see those looks you give me when you think I need to get my child to behave differently. That I need to discipline differently. Or that I’m weak. What you don’t know is that we’ve spent thousands on therapy and frankly, the many therapists we’ve seen think we are doing an incredible job. The thing is that when you have a child that processes the world differently, she’s doing her best to hold it all together but she can only hold it in for so long.
Most of all, I know that when everyone is talking you might think that I have a rude child who randomly chimes in with sentences that don’t make sense. And that she also constantly interrupts people. I know that you might think this really annoying. What you don’t know is that, we are trying so hard to work on that and that it breaks my heart that it is so hard for her that she doesn’t even recognize that a conversation is going on. Can you imagine what that would be like?
More than anything I wish you would know how absolutely broken I am as a Mom. I wish I could have your support. I need it more than anything. I’m exhausted from not getting sleep. I’m burned out from the never ending therapy we have to do at home and traveling to see so many therapists. And my heart hurts because it’s so hard for my daughter to function typically.
This isn’t something that she will grow out of.
But, I’ve put everything I have into helping her to cope with it, it’s my life. All of it.
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