Thursday, January 28, 2016

Invisible Needs

This picture has almost nothing to do with this post.  It is just one of my favorite pictures of #1.

I don't actually think people read this blog anymore.  That is fine.  I just need a space to express some feelings.

#1 has Sensory Processing Disorder.  She was diagnosed in the state of Oklahoma, and she was considered special needs.

We have moved to another state and here she isn't considered special needs.

But she is still the same kid.  She still has the same struggles.  And I work with her on things every day.  It is a constant effort to try to get her to function well with her surroundings.

I have a few friends with visibly special needs kids.  I have heard them talk about how hard it is when their kids don't make friends or when they are left out.   Occasionally they will have people who make a special effort to reach out, but most often they are just left out.  Hearing this has always made me sad and we try hard to include other children.

I have a child with invisible special needs.  The most common things I am told when I tell adults about my kid are, "She is just fine."  "She acts like other kids her age"  "It is just a behavior problem and she just needs a little discipline."

She does struggle with behavior.  She is often like the other kids her age.  She is often just fine.  But if you really watch, she is a little bit different.  Adults don't really notice unless she is having a meltdown.  But kids notice.  And they don't like it.

For a while now I have noticed that she has struggles in social situations.  When struggles start then she tends to whine a lot.  Then other kids start to avoid her.  But she didn't notice this was happening.  We have been working really hard on not whining.  She doesn't always remember though.

Last week she was sad because some of her friends didn't want to play with her.  We had a long talk about whining and I told her that they didn't want to play with her because she whined.  We have been working SO hard at staying calm and being happy with friends.  She is finally starting to improve.

Along with all of this, she is pretty head strong.  She doesn't like to be bossed around.  There are 2 little girls that we play with sometimes and #1 thinks they are SO great! These girls are both in situations where they don't have to share.  One is the youngest child, so her siblings are at school all day, thus she has free reign over her toys.  The other is the only girl in her family, so she is used to not having to share any of the girly toys.  She also mothers her little brother and bosses him around.  He plays along.  I have watched these girls look at #1 and run away from her.  If they don't do that then they are bossing her around and then are unkind when she doesn't do what they want.

Today we were in a social situation and #1 kept playing with the lights.  Every time she would turn off the lights these other girls would run over to turn them back on.  I told #1 she needed to stop or we would have to go home.  She didn't stop so we left.  She cried the entire way home.  Once we got home and she calmed down a bit we had a talk.  She asked me why the other girls didn't want to play with her.  She told me that she turned off the lights because then the other girls would come over and turn them back on.  She thought they were finally playing.

Today, I held my special needs child and cried with her as we both felt sad.  #1 is "typical" enough that she knows when people aren't being nice to her.  She is special needs enough to not know how to handle situations.  (And she is only 4)  She looks normal enough that parents don't encourage the extra kindness often given to children with visible needs.

Her perfect world was shattered today.  She now knows that she is different.  And her heart is broken.

As a mom, my heart is broken too.


Anonymous said...

I feel your pain and I can't believe she is already four. It seems like she was just born - how time flies. To me, it seems wrong that sensory processing is not considered a special needs. My boys were considered ESE for what we thought were just speech disorders (turns out they have more issues than that). And I totally get what you mean about people thinking that if you just discipline them different the behaviors will change. They don't. It gets worse. Good luck and my prayers are with you and your family.

Leann Nelson said...

This broke my heart to read!! I am so sorry!! Give your sweet #1 a hug from Lelann and have her hug you back from Lelann! Love you guys!

Miss Nelson said...

Oh, I'm so sorry!! Love you both - so very much!