Sunday, March 25, 2012

A 2 year old in a 5yo body

What's it like?  I'm going to tell you what it is like for us as a family.  Many wondering why people adopt kids that are so delayed.  They only see delays.  I'm going to tell you what we see.  The good, the bad and the ugly of it all.  Summer came home to us just 3 months ago.  She has agenesis of the corpus callosum and colpocephaly.  She also has low white matter in her brain.  We are slowly working through the laundry list of specialists we need to see due to this dx.  Since these children have to work through rewiring of some pathways in their brains, learning things such as walking, writing, speech etc. will most likely be delayed.  She did not walk till almost two and that was with help.  Her speech is delayed as is gross and fine motor skills.  She was evaluated recently and everything is on par w/ a just turned 2yo level.  Hey, the age I always, always wanted to adopt but never had the chance to.

So, naturally, we must make adjustments in the house for a 2yo running around in a 5yo body.  Some of these children are wobbly.  Summer was one of those kids.  Very wobbly.  Fell all the time when first home.  Fell out of the van every time we went somewhere.  Fell off the dining room chair.  Fell out of bed.  Fell going up the stairs.  You name it, she fell off of it.  Now, she can run.  Yes, run.  She'll fall occasionally, but not too often.  It's so much fun watching her run and kick the soccer ball at the same time.  Summer will still fall with running but still not bad.

Summer can not decide if she's right or left handed and that is simply b/c her brain can not talk to each other.  No connection between the hemispheres.  Summer's emotions are pretty on par w/ a two year old.  At best.  You can make silly faces at her like you would a baby and speak baby talk to her and she'll giggle the sweetest giggle.  If you say a word, Summer will repeat it.  However, she can not really speak on her own yet.  And I say yet w/ promise.  Her brain can't seem to process what the conversation should be coming out.  So words don't come out really.  Just gibberish.  Not sure if this will be life long or just a few years.

Summer, like a 2yo, must be reminded to eat.  Otherwise, it's just not of importance to her.  We used to use a sippy cup but really, she does fine w/out one now so letting her be a big girl in the areas she can.  Summer needs help getting dressed.  She tries so dog gone hard.  So hard.  I wish some of my 'on target' kids would put half as much effort forth as she does.  Summer can not button or zip or any of that stuff yet.  She'll get there.  I'll steal a line from a friend... 5 is the new 2 you know.  In their family they say 3 is the new 18 months.  Love it!  Anyhow, Summer is working on some basics.  Learning how to color.  Learning how to eat the way she's supposed to w/ utensils.  She has a whole world to explore and learn from.

Summer is at the 2yo age.  Everything is "what is this?  What is this?  What is this?  At least 50 times a day.  It gets old but yet it doesn't.  Love hearing her say it.  It means she is trying to learn.  Emotionally, Summer is 2yo if not younger.  She'll dramatically fall to the ground and attempt what looks like a tantrum.  Those who didn't know her, would pick her up thinking she was hurt.  Happened again today.  We just let her lay there.  She will learn.  I did eventually scoop her up like a baby, walk and rock her at the same time and talk to her.  She stopped.  We talked about what she did. Remember though, with all her brain disorders, this can happen tomorrow and she won't remember a thing.  Just the way it goes.  Thankfully, we have FASers too so we know repetition is key.  Forget today, what you won't remember tomorrow is what I say.  LOL.  Sometimes, you must have a sense of humor.  Otherwise, you'd go insane.

We were not expecting her not to be potty trained.  We were told she was.  Clearly, she is not.  Diapers on a 5yo are not the easiest to deal with.  Not fun.  But, we go at her pace and if that is where she's at, then that's where we are.  Doesn't mean we aren't trying to potty train her like crazy though.  Just know that now I know why people give diapers at baby showers.  They're expensive!

It's hard having a 5yo that's a 2yo in nature some times.  Others, I love it to pieces.  I love how she is fascinated by the simple things in life. I love how she could careless what a cell phone or ipod is.  Yet, go to a kindergarten class today & they'll tell you.  Some of them even have their own if you can believe it.  That drove me nuts last year.  Really, it did.  Kids that age are never out of supervision of an adult so really, there is no need for one. Just my opinion.  Summer has no concept of these things.  She likes picking flowers or swinging or playing on the trampoline.  She loves the simple things of life.  The hammock is her favorite spot to swing.  She is learning how to play with toys now.  Watching her with dolls is a real treat for sure.  As a 2yo, she's learning how to talk.  She's learning the word no.  Learning how to imitate.  Summer has a ways to go.  Yet, just look at all she has accomplished thus far!  Amazing would be an understatement.  When she came here, she could not do things without falling.  She used to look at her food instead of eat it.  Expecting someone to feed her.  She used to be terrified of the tub.  She used to cry all the time.  Now, summer is full of life. We have seen such a transformation in our 5yo/ 2yo little girl.  She is growing by leaps and bounds.  I know at times people don't understand why we must treat her as though she is 2yo. b/c she looks like a 4 or 5yo.  However, it is for the benefit of her development so that's where we are.  We have learned not to care where they are developmentally and at what age.  Nik & Max were at an 18 month old level when they came home and caught up very quickly.  I know Summer's case is much different and will most likely remain very delayed developmentally.  But to see each accomplishment, it just means a lot.  Many don't think it is a big deal that she can now put a ponytail holder in her hair.  But we do!  She can hold a fork.  She can drink w/out spilling.  The list goes on and on.  She doesn't wobble any more. It's fantastic!  We see so much growth and potential.  yes, I will admit that some times it is hard having a 2yo in a 5yo body.  However, I have always dreamed of having a 2yo and I think I sort of got my wish!  And you know what, I don't care how long I have my 2yo little girl.  She's my little baby girl.  Yes, I want her to grow up but we will take it at her pace and her time. 

BTW, I wrote this earlier.  Guess what Summer did today for the first time ever?!  Went to the potty all by herself.  Did you hear that?!  All by herself.  She came running to me SO excited and proud of herself.  this is huge btw.  Very huge.  For her, everything takes longer.  Signals take longer for the brain to figure things out since it is missing a key component of message carrying.  Summer continues to amaze me daily with what all she can do.  Hey, we may be able to get out of those diapers quicker than age 8 or 9.  Oh, wouldn't that be wonderful?  Just had to share.  I know most would be not as excited but I am.  I know that most kids figure this out years before she did but she did it.  All by herself.  Very proud today.  she stayed in underwear all day long & did not get them wet.  Amazing.  We may get this!  So, if you have a 2yo in a 5yo body, don't sweat it.  It comes in time.  And what doesn't, you find another way to handle it.


  1. Right there with you, my friend. Amen.

  2. Just a thought on the potty should look up something called "illumination communication" - it is generally used on babies, but considering where she is it might still be worth looking into.