Routines

Some might say that routines make the world go 'round.  Not me.  Nope, I say that routines keep the world stable and firmly in place.  My lad is a huge fan of routines and plans.  He always has a plan, and if he can't set the plan he needs to know what the plan is going to be.  Start to finish... if I could tell him when all pee breaks were intended to take place I'm sure that would only raise my plan/routine plotting to a whole new delightful level for him.

Today saw a routine change, and it was not well received.  Mitul is traveling for business, and mornings are his thing.  These two boys have their routine and it runs smoothly.  I don't stick my face in it; except for when there is travel involved.  So today my face was all there.

First, I kiboshed the TV watching and asked him to read a book while I made his breakfast.  This was a hard sell, but he did give in after much debate and worry.  During the breakfast consumption he let me know that he thought it was better when I followed Daddy's routine.  And I calmly explained that when I do mornings with him, I have to get us both ready and that I would make some changes to help that happen.  Things were going fine, time was ticking down, and then I asked him to put on his socks and shoes.  O. M. G.  This was clearly a huge error.... there were many questions and then his hands started moving.... and his shook quickly side to side.  And he panicked and asked if we were leaving now, or something?? I tried to explain that it would just be easier, but to no avail...the hand moving, head shaking, and bargaining, confusing got louder and louder.  Then it happened.  I shouted at him to put on his socks at least!  And that little head stopped moving.  He looked at me with huge eyes and the corners of his mouth down turned, and he shouted back 'I just want to understand why'.  I felt like a real jerk.  Shouting at my lad never helps, it just raises his anxiety.  Not my best moment... but I'll tell you what, he put on his socks.

It's been such a long time!

4 1/2 years... almost to the day.  Hard to believe so much time has passed without a single blog post.  Maybe that seems like I'd forgotten all about the perils of preemie life; but in actuality my information shifted from blogging to Facebook.  My Mum made a page dedicated to our March of Dimes team, and a lot of what was happening in my life resides on her personal page.  But now, it's time to hand over the reins of this blog.  So let me present to you: Mum.  

Hi... this is Mum.  Tammy Shah, stay at home Mum, protector of said preemie, self professed advocate extraordinaire.  It is I who wrote this blog for those first years, and I told the story through Ethan's eyes because it made sense to me.  But now? Well he has his own voice, and it's loud,  He doesn't need me to blog his life through his eyes anymore, but I find that I need to blog his life through mine.  

So much has happened in these 4 1/2 years.  So many joys!  So many achievements!  So much frustration.... changes, maturing, back steps, diagnosis.  So much.  Let's start with the good which is that Ethan is healthy and happy!  He is a thriving 9 1/2 year old who stands a massive 4'9" tall and weighs in at about 110 lbs.  He's come so far from those tiny beginnings.  He's a polite kiddo who I'm always happy to take places and to allow him to visit with his friends.  I think we're doing this parenting thing alright.  I always feel blessed to be his Mum.  ALWAYS.  

Today I was shopping for Easter... books.  The child loves to read, so I was shopping books.  I made my choices, I was happy about them and then I passed the section that I most avoid since this past fall.  Fall was when the official Autism diagnosis came in.  Fall was when it became real.  Fall was when I started avoiding this section of the store.  It was Fall.  I borrowed a book from a wonderful supportive friend and I have skimmed it many times.  I read some here and there.  

It has struck me.  I am a strong woman!  I have lived through a lot and I'm secure walking in my shoes.  But just today...looking at those books...I thought, am I strong enough for Autism?  Ethan is, I know he is.  He won't know any different and he will go about his life with his self professed advocate extraordinaire at his side.   But when I try to pick a book, I feel tears prick my ears.  I skim them and hone in on the word 'toddler'.  My boy isn't a toddler, not even close.  And I'm angry with myself for not paying better attention, for not doing the testing sooner.  I'm mad at myself for having to navigate this at 9 instead of 7 or 5 or 3.  The days march on and we haven't even talked with him yet about his diagnosis.  I can't figure out the right time!  Is Friday evening best so we can field questions through out the weekend??  Maybe Saturday AM over pancakes at iHop??  When?  When do I confirm what he already feels, that he is a little different from the other kids in his class.  Not bad different...just different.  I think people may be rolling their eyes now, so hear me out.  I have watched Ethan struggle since before he was even born.  Those 5 weeks without any amniotic fluid to help him learn vital skills, those first days after birth when he was clinging to life, those 104 days in the NICU.  Then how he struggled to learn how to move his body, to roll over at 15 months, crawl at 18, walk at 24.  I was by his side the whole way transitioning from Early Intervention to preschool, and coping with the CP diagnosis.  I witnessed his sadness when other kids are so much faster than him, and how each year there is some kid who bullies him.  So Autism, to me, is just another thing he has to struggle with.  And today...while I was shopping, I could only sigh and think to myself that it's just not fair.  

But tomorrow is a new day.