Dear friends and family who don’t know my child has Sensory Processing Disorder…

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.

Dear friends and family who don't know my child has sensory Processing Disorder...
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.

signature copy

You might also like: 

For When Your Family Doesn't See Your Child's Special Needs Take a Day "Off" for Family Fun. 31 Days to Loving Sensory Parenting. Family Events and Sensory Processing Disorder

9 thoughts on “Dear friends and family who don’t know my child has Sensory Processing Disorder…

  1. MamaCee

    So so so so so so true. Wish I’d had the support of family during our child’s earlier years. I literally didn’t sleep until he was 4. The hardest part for me was the fact that I KNOW people think I’m making excuses for his behavior. Very hard. I will continue on and love him even more. Thanks for this.

  2. JustaMom

    Omg, I’m crying. Not been diagnosed officially with SPD, but this is my 3 year old daughter exactly. Everyone thinks she’s a brat and some family members refer to her as feral. They think I’m a terrible parent because of her “wildness” and want to know where I went wrong. Her sister is a picture perfect doll of little girl politeness and sweet behavior. My husband is in denial and says she’s spirited and gets angry. He says I’m not trying hard enough, but my god I’m running on empty right now! I love love love my children so much, the thought of failing them is breaking me. I am bawling right now because this article is making it all CLICK. Doctor’s appointment next week to get the ball rolling with what exactly is going on. Thanks for writing this.

  3. Bronwyn

    We are just finding out that our 2 year old son has sensory issues. No specific diagnosis yet, as he is in the middle of assessments. I have always seen his quirks as adorable and unique. It is really impacting his ability to talk though, so we are trying to get him as much help as possible. I do feel like people judge me when I let him wallow in mud puddles like a little piglet or when we go on walks with him only wearing a diaper. Maybe it is because he is my second of three kids , but I care very little about what anyone else thinks. He is a very happy child and I can help him be happy by letting him do those things. I think it will get more difficult when he gets to school age. I’m not the kind of mom who could stay calm if another kid made him feel bad about his differences. I adore them, even while acknowledging that they often make my life harder.

  4. Shauna

    Love this! I’m in tears. My 9 year old daughter was just diagnosed with SPD and it’s not easy seeing her do things that others will perceive her to being just disrespectful or bratty (like interrupting or being super loud). I question whether or not to tell everyone of her diagnosis but it shouldn’t matter. Wish we could all be less judgemental and more encouraging to one another. Thank you for writing this!

  5. Noelle

    Thank you!! I’ve had a relative sit me down twice to tell me I am ruining my child, not disciplining her enough, shouldn’t let this continue, need to just spank her until her behavior changes, etc. No one sees how hard we work behind the scenes when that doesn’t translate to a certain ideal of what people think a child is supposed to act like.

  6. Consuela

    Thank you! This so parallels our lives….its what we do…our normal,whatever that means. Helpful to know we are not the only ones who struggle. Cheers!

  7. Ayerim Duenas

    I have a sensory almost 5 year old daughter and I have recently become aware that her trouble falling asleep is part of the sensory issue. I have learned through reading this article that her constant conversation interruptions are also part of it. Thank you so much for that info. It will help me better understand my precious daughter and help her better.


Leave a Reply

Your email address will not be published. Required fields are marked *