Sunday, April 21, 2013

free flowing

I have no theme or purpose for posting, instead just a random stream of thoughts that have been happening around the Robbins House.  First off we are trapped in a winter wonder land and at this point I am seriously thinking Christmas is next week and I am about to go chop down a damn tree and decorate it, I figure just go for the gusto- what else is one to do with 6 inches of snow in April??? Seriously- these are the years we talk about moving far far away!  

Life has been insanely busy, nothing new, in fact I am learning that is going to be normal for probably the remainder of my days, when we decided to have 4 kids, well, it was all down hill on the free time of life category. 

I had a weekend away with some girlfriends and honestly there is nothing better for the soul.  So many reasons, but really, the main one, that we are all connected in our crazy land.  We all just want love and acceptance and forgiveness for our mistakes.  I wish it were that easy, but for that weekend it was.  Lots of laughs, tears, and tons of love.  And I came back to a clean house and happy children, what more could a mama ask for?  Jeremy did a dang good job holding down the fort for three days, I mean seriously I was impressed.  And I think it encouraged me to do it more often...hehehe...

Life with the kiddos is good.  Graham is doing amazing at school and just soaking up learning like a sponge, it's awesome to watch.  Audrey is really into gymnastics and very excited to start Kindergarten, keeps waiting for time to speed up so she can be at the big school!  I would like it to slow down, she's so big and capable and it melts and breaks my heart in the same instant.

Nolan is doing amazing.  He is my favorite...well right now...they change with the seasons or even the day!  He is so flipping sweet and funny.  Tons of personality and his signing is literally incredible, I need to make a video, he signs at least 50 signs now- and really he would learn one with about 2 repitions- we just need to learn more!  He says a couple of words "ahh duh" for all done and "ba" for ball.  Honestly I can't say I really care, because he signs so well, it doesn't matter.  This morning I brought him into our bed and he signed, "down" then "yogurt" then "bacon"...haha, he was a hungry boy and it's awesome to see him get it.  I have really been feeling so relieved and happy with his progress.  He is getting a minor surgery in about a month- tubes- and a sedated ABR, since he's had fluid the last three attempts to get a hearing test.  Will be good to just get some answers if he is in fact having problems hearing.  He has orthodics on his feet now, but still no walking, his standing is amazing and he will walk with your fingers, but oh well, in good time, I am thinking by his 3rd birthday in late August.  It will be heaven on earth when I can set him down and he stands up and doesn't try to crawl away!  Instead he will just run away- yeah I know, it's not really easier!

EJ well he's had a rough bit with being sick, it seems like he had about 2 weeks of health in the last 4 months, respiratory and double ear infections non stop.  I want to keep him in a bubble and trust me I try to, but with 3 other small kids around, it's a challenge.  To be honest it's exhausting, I am up from 2-3 times a night and early in the morning and then all day he's cranky and hard to calm.  He has a couple days of improvement and then bam he's bad again.  It's when I find myself getting pissed.  Pissed that he has a weak immune system and that between him and Nolan someone is ALWAYS sick around here and then I get exhausted and then cranky and then, well you know.  It's when I stop and think of the months going by and that he is almost 10 months old and is 12 pounds.  TINY is an understatement.  He eats like a champ, I haven't tried solids yet, no good reason, just that he can't sit up so doesn't make it very easy for feeding him.  I don't push him or really measure him on a chart, I don't really engage his therapies as I 'should', I don't know, maybe because I am already doing twice a week for Nolan and have 2 other kids and their activities to attend to.  I don't want to waste OUR whole lives on therapies.  I know, I am bad, probably going to be fired as a special needs mom any moment? Wait is that an option? LOL. 

I am still shocked at moments that this is our life.  I still pause- when I was bowling with G and A this weekend and realized this could have been my life.  2 kids.  Easy.  SO easy.  I think the hardest part is and always will be that we just don't know what life looks like.  I sat there cursing in my head, things like- "Grace of course you can still do all these things, don't be ridiculous, you can bowl with them!!!"  But, it's not that simple.  When you have typical kids you think, ok in 3 years we can take them bowling, or skiing, or to Disney, you know when they will do certain things and you can plan on that.  It's what I find most difficult to find the answers to- When is the getting up every night going to end?  After 4 kids, it doesn't seem it has in 6 years!  Are we ever going to be outside at our house and they will just all run and play and be OK?  Will all of them interact like they do now, forever?  G and A love making their brother's giggle and taking baths with them and helping Nolan to walk across the room or get out of his crib.  Will they always want to help? Or get old and look at me like, really?  I worry about that.  When will visiting Children's hospital not be weekly or monthly but yearly?  EVER?  When will I plan hair appointments more than surgeries? We were going over designs for the new house with our builder and the surgery scheduler called me and I had to take it, they could hear it was important and whispered something about we can do this later and I simply put up my finger and needed one minute and on with design we go.  That's life now, I am not sure if I think that is good or bad, but whatever it is, it is our reality.  I schedule appointments and surgeries like play dates and sometimes they each get cancelled due to a sick kid and you simply re-schedule. 

I wonder with every new "typical" baby born, why not us?  Why twice?  I try to tell myself lately that it will be so good for both of them to have each other, throughout their life they will have a friend and that is something- actually the only thing- I prayed for every night when Nolan was born.  That he be liked, happy and have a friend.  I guess my prayers were answered. 

Tuesday, April 2, 2013

Robert Ethan Saylor

I am ashamed to say that I heard of this story less than a week ago.  Ashamed because clearly when a 26 year old man dies in a movie theater from what appears to be police restraints it should make a bigger headline.  It seems that if he had been typical and simply overweight and having a heart condition, human interest groups would adopt his cause and burn a fire under investigators to ensure this type of practice doesn't occur again.  But, sadly, that isn't the story.  Robert Ethan Saylor, who was called Ethan, was a 26 year old man with Down Syndrome.  His care giver had brought him to see Zero Dark Thirty and upon leaving the movie she went to get the car and left him in the lobby.  At which point, he tried to enter the theater to watch the movie again.  At this point, he was told to buy another ticket or leave the theater.  He became upset and emotional and having a history of aggressive behavior when being touched by strangers began to react.  Three off duty deputies were called.  They proceeded to attempt to escort him out of the theater and he became more aggitated and reportedly shouted, "I want my mommy!" and they began to handcuff his large frame, he melted and landed face down on the ground.  His heart rate was weak when paramedics arrived and attempts to revive him failed.  He died that day over a movie ticket.

I have tears streaming down my face, imagining one of my sweet boys, confused, lonely and scared screaming for me to help them and I am not there.  My heart pounds and aches with the fear that any mother feels when faced with their child dying alone and frightened.   There are many stories of Ethan's loving, kind nature, his respect and awe for the police.  There are also stories of his history of violent outbursts with lack of communication or full understanding in situations that he became scared.  I am not sure how many times these incidents happened, maybe daily, maybe yearly.  Maybe it doesn't matter.  Maybe the point is this.  There were presumably people around witnessing this event.  People who could have offered to pay a $7 ticket to assist him and de-esculate the situation that clearly got out of hand quickly.  There seems to be many holes in this story.  Where was the caregiver and why did they leave him if he was prone to non-cooperative behavior?  Why weren't these police trained and aware of his mental capacity not being typical and how to calm down a situation such as this rather than amp it up?  And let's just say he was typical and yes overweight and yes had a heart condition that no one could see, shouldn't police know the risks in restraining such individuals with force and the consequence of death being possible?  And really all for what?  A movie ticket. 

Jeremy and I had a long discussion about this case.  You would think that my reaciton was one of horror and blame.  You would most likely be surprised to know that I do not err on the side of my children needing "special" treatment, any of them.  Recently I was discussing preschools with Nolan's therapists and putting him in a typical school with three year olds.  I said something, "I don't want him to take away from the entire class room of children because his needs will require more attention then the rest.  I don't think that is fair for the typical children."  I don't.  I think that if he can walk and communicate and listen then great, if not, he needs to be in an environement that is staffed to assist him and not take away from the others in his class.  I felt the same was about Ethan.  If he had a tendecy to struggle with strangers and get violent, then he shouldn't have been left alone, ever.  Should he be watching such a violent movie if this is something that he struggles with?  Why couldn't someone just buy him a damn ticket?  All those things race through my mind.  I don't think simply that because he has a disablity the whole world should be expected to know his needs and act accordingly.  We make decisions as parents, to put our children in siutions every day, we weigh those decisions based on their abilities, typcial or different.  I hope that most people will help them, hug them if they fall, stand up to a bully if needed, give them a phone to call home if they are lost, we all hope that those around us see our babies through our loving lenses.  Unfortunatley that isn't the world we live in all the time, every day.

I was talking to my aunt and we were talking about my frustration with people with disabilities doing jobs that are less then perfect and expecting patrons of stores to be OK with that because they have a disability.  I have struggled with this because for me it gives my sons a harder time, when someone is in a hurry to get going and slowly each item is being scanned ever so perfectly through the line, and time is ticking, their frustrations growing, many of them aren't thinking the thoughts that we would hope for about that person with such disability behind the counter.  And then she said something that changed it for me.  "We could all use a moment to slow down and see people."  It's true.  We could. Please do.  Please see my boys.  I promise to see yours.