Hindsight

Hindsight is always 20/20...

I realize now that it was there the second he was born.

- The nurses thought it was odd that he didn't cry when he got his vitamin K shot at birth.
- They had to MAKE him cry to get his Apgar. 
- He didn't flinch when they did his PKU stick.

I joked that he was tough like his Daddy.

- He fought being swaddled...he HAD to have his hands free. (At a day old)
- He would only sleep facedown on my chest....until he got older and was so heavy I couldn't breathe. 
- The only way to get sleep in chunks longer than 30mins was to have him in bed next to me. Even then he only slept an hour at a time...until 6 months and he "graduated" to 2 hours at a time.

I'm justified it by saying that I'm not a good sleeper and poor thing must have inherited my insomnia.

- If we went out to eat it couldn't be busy...and God Help Me if someone had a birthday. We'd have to eat fast or the screaming would start.
- He spent most of his life diaperless because a wet diaper meant screaming bloody murder.
- I would spend hours on my feet walking or hours in the glider rocking because it was the only way he would nap.

I learned about "high needs" kids and saw a lot of my son in it.

- He falls down and I hold my breath...will he laugh and shrug it off or will this be a screaming fit?
- I have to wipe his hands numerous times during dinner...he falls and gets dirt on his hands and screams until you wipe them off. 

He's quirky. He's unique.

- Night-weaning takes a month. A month of no sleep and screaming for hours. 
- Nothing helps him sleep...I do EVERYTHING that's suggested to me...routine/no routine, noise machine, dark room, aromatherapy...and bedtime is still an hour of screaming. Or...
- We let him sit on the couch until 10pm when he passes out sitting up. 

High Needs. Spirited. Insomnia. That's it, right?

- He jumps off the couch and crashes to the floor. That can't be comfortable and it sure isn't safe. And try as I might I can't.make.him.stop.
- There are no clean bottles and I try to give him milk in a cup. He starts screaming hysterically. This goes on for at least 10mins...I even wash a bottle and fill it with milk but by then he's too far gone. His breathing is ragged, he's gagging, he's bright red...I cry with him because it's painful to watch.

My depression gets worse. My anxiety goes up. I frequently sit in the shower and cry because deep down I know that something isn't right.


Now I know...something WASN'T right. He has Sensory Processing Disorder. It's actually pretty mild...but when you're in the middle of things it doesn't seem like it.

So when you see the kid screaming in the high chair, see the mom updating Facebook again about how overwhelmed she is, or hear the kid screaming in the grocery store don't judge. I'm doing the very best I can.

The Update You're All Waiting To Read

Franklin got evaluated yesterday on speech and for sensory processing disorder.

He qualifies for the program!

What is Sensory Processing Disorder? Here's a link to a short video that I thought was very informative (and easy to understand as it's made for kids)

Basically, sometimes when people are processing information it doesn't process correctly. Lines get crossed or things go too fast or too slow.

For example:
A neurotypical person hears the vacuum cleaner and it sounds normal...like you would expect a vacuum to sound. Someone with SPD might process it as a nothing sound (like, barely register it) and another might process it as pain.

Some things they noticed about Franklin:

- They showed him how to play with a toy and then tried to get him to play with it another way...and he wouldn't do it because that's not how you play with that toy. (Stefan realized last night that this is why getting him to drink milk out of a glass is so hard...he's ALWAYS had it from the bottle. To him, that is where you have milk)

 

- He tuned them out a lot because he wasn't finished doing X Activity. (This is why discipline is SO HARD! He doesn't distract.)

(those two things they want to work on...being able to stop an activity even if it's not perfect)

 

- He's still a bit behind on language.

 

- When he's upset and calming down (he had a tantrum while they were here) he makes this specific tone noise (a whining noise) They said that for him that sound feels good. One of our goals is to give him other ways to calm down.

 

- They want to work on his pretend play. He doesn't do it.

- He plays rough with people because that's how HE likes to be played with...he doesn't understand that not everyone needs the firm touch that he does.

 

 

They said we have to go outside AT LEAST twice a day. (It's about to be too hot to go out in the afternoon) They want him to do more heavy work activities and find ways to get that deep touch (so he stops throwing himself off of the couch).

 

Basically, I feel really good about it. Right now someone will be coming out weekly to see him. (The ECI Specialist) The Speech Person and OT will come monthly right now.

 

They said he's perfect for the program. He's not an extreme case but there's enough there that we can get tools to help him. That's all we wanted, really.

What was the evaluation like? They came in (armed with a suitcase full of toys and books with pictures) and sat on the floor and played with him. They alternated playing with Franklin and asking us questions. And then they sat back and watched him walk around and play. It was really low key.

I'll be honest, I had to keep reminding myself that they were here to evaluate FRANKLIN and not ME. I guess it's ego...but no parent wants to admit that their child is less than perfect. I've also been struggling with "is there something *I* did wrong?" Every time they asked, "Does he do X?" and I had to answer in the negative I felt the need to defend myself. That was hard for me.

Things are better already. They gave us some things to think about and a couple of tools. The Occupational Therapist said that if I observe him I can learn what he needs. When he's throwing toys it's because his muscles need more stimulation so I should find a "heavy work" activity to help tire them out. (Like, pushing/pulling/lifting heavy things...we filled his little backpack with cans. Last night before bed he had to "wheelbarrow walk" across the living room) When he's crashing around and jumping off of the couch it's because he needs that deep touch. Like you get from a hard massage, the nerves interpret it the same way. So, I can roll him tight in a blanket or massage his legs.

This also explains why spankings rarely work. He LIKES the deep touch, so a spanking barely registers...or it registers too high. There is no middle ground. 

Please ask questions!