Confessions of an SPD Mom

SPD stands for Sensory Processing Disorder.  What is SPD you ask?  Here is a SHORT simple video that gives a good simple explanation:

Caleb has SPD and has been going to Occupational Therapy (OT) every week for just about one year now.

Before OT he couldn’t get a haircut without screaming, crying, basically being in terror and saying his haircut hurt.  I had to sit in the chair with him on my lap and hold him down the whole time.  During his last haircut he didn’t shed ONE tear, sat mostly still and even let her use the clippers!!  The change is unbelievable!

Before OT he couldn’t get his finger or toe nails cut without thrashing, screaming, crying and telling us we were hurting him.  It took TWO adults to hold him down and cut his toe nails (and usually ended with Caleb AND me crying!)  Last night I cut his toes AND fingers without ONE SINGLE tear and almost no kicking or thrashing!  I was so proud of him (and he was proud of himself!) that I gave him a piece of candy even AFTER he had already brushed his teeth!  😉

In addition to the physical difficulties his SPD affects his brain functions.  His brain has a hard time with the higher brain functions.  So when something is different (out of routine he prefers) or he is told “no” or plans change he goes straight to tantrum.  He has a hard time understanding that (for example) “you can’t play that game right now, but in 5 minutes I will sit down and play with you.”  He can’t think through the “not now but later yes” part of the situation.

He has a very difficult time with new food.  Even the same food but prepared differently.  It’s frustrating to only be able to prepare the same several meals all the time.  For example, mac and cheese HAS to be only the Kraft macaroni and cheese.  He has had the same lunch for the last 4 years!  OT, and growing up, has helped him be a bit more adventurous and try new things, but it is a STRUGGLE!

There are so many things that OT has helped him with this past year.

But there are still so many struggles!  So many difficult things to deal with every moment of every day.

Here’s the confession part.  I feel guilty all the time.

Summer vacation is almost done.  I feel so guilty saying this, but I’m just being real….

I’m actually excited for school to start again!  I HATE saying that, but summer vacation has been pretty tough.

Caleb doesn’t play well on his own (unless it’s video games).  He doesn’t do well with imaginative play.  He needs to be entertained or have me play WITH him.  But he also has such a hard time focusing on anything for longer than a few minutes.  So, we pull out the play-doh, but he’s done with it in a few minutes and ready to move on to something else.  I run out of ideas quickly!

I’m also not good at structure and routine.  School is good for him in some ways because it provides that structure and routine that is hard to get at home, especially with a little sister around.

I need to be doing so much more therapy with him at home but it’s so hard to fit it in.  Adara is getting speech therapy and OT as well as Caleb getting OT.  So they both have things I need to do with them along with diaper changes, meals, naps, cleaning, grocery shopping, playing, etc.  It’s frustrating to me when I get to the end of the day and see how much I did NOT do with them!

And the NOISE!  OMG THE NOISE!!

Part of Caleb’s SPD is needing input in his body all the time.  One of his big issues is craving input in his mouth and face.  So he makes noises.  ALL. THE. TIME. He goes through phases of what noise he makes.  Just recently it was a farting sound on his arm.  Now it has switched to a weird throat sound.  He also yells a lot, sometimes just talks loud.  But lots of yelling.  And Adara wants to be just like her big brother, so she’s taken to yelling a lot!  Some days the noise of a day just puts me over the edge!!

I feel guilty for being annoyed by him and his issues.  I feel guilty for not helping him more.  I feel guilty that I want him to go to school again.

And I feel guilty for thinking about how this affects ME.

Because it’s HIS poor little body that is dealing with all this!  HE is the one who has all these things firing in his brain and his body making him hyper and need to make noise and not able to sit still or focus.  It’s HIS brain that is misfiring in his body.

And then my heart breaks for him.  I wonder how this will affect him throughout his life.

As much as I would like for him to go back to school, I fear for him.  I wonder how the other kids in school will deal with his noises.  I wonder, as he gets older, what kids will say when he sits too close to them because he needs to feel someone next to him to tell his body where he is in space.  I wonder if kids will tease him because he needs extra tools and allowances in class to help him focus on his work and he still doesn’t get as much done as the other kids.

I pray God protects his sweet little heart from the whispers, the names he might be called, the glares.  I pray God helps his body to regulate, to recalibrate so he can have less challenges.  I pray that as he grows up he will be able to find what helps his body feel better and be able to do that for himself.  I pray that God uses this in his life to touch others, to show others God’s unconditional love and acceptance.

SPD is tough for the whole family.  But I don’t want to get so focused on how hard it is on ME and forget how hard it is on HIM!

God has blessed me with two amazing kids who need a little extra help with things.  He created them so special, beautiful and wonderful.  And just right for our family!

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One thought on “Confessions of an SPD Mom

  1. Wow! You’re amazing Vicki! Keep writing from the heart and let it pour from your soul. Honesty will lay it out so you can look at it as it really is and make connections and sometimes make some sense of life. Thank you for this and I’m glad I stopped by! Now I’m going to follow and stalk you! lol Love ya girl! Keep it up.

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