A Letter To My First Born

Dear Easton,

First of all, I want you to know how unbelievably amazing you are.  You are the boy who made me a mom and I'm so grateful God chose you for me.  You are so incredibly kind, patient, inquisitive, smart- holy moly are you smart, and compassionate.  I've never seen such compassion in a person your age.

I can't even tell you the joy you bring to me and your dad.  But I know life hasn't been easy.  I'm sorry.  I know as you and your brothers have grown our family has had to take the road less traveled. The autism road.  And all the while you've just rolled with it.  So many times you've wanted to do something or go somewhere and we couldn't.  Those were times autism had us in it's grips or we were so utterly exhausted we couldn't fathom leaving the house.

There was so much we were trying to figure out in those early years.  Trying to figure out why your brother couldn't sleep through the night, why he wouldn't eat, why he screamed and cried for hours on end and so many other really hard things.  And I'll admit, while we tried to figure these things out, while we had to devote so much time and attention to your brother we sometimes didn't have the energy to give you the time you so much deserved.

I've always wondered how all of this will affect you.  Will all of what you've experienced make you angry?  Make you impatient? Will it make you bitter or hold a grudge?  I know I second guess myself every day.  Wondering if we're making the right decisions for you and your brothers.  Whether how we've handled certain situations was the right way.

But they way you deal with things have really opened my eyes, buddy.  Over the years I've seen you try to help your brother when he's in a severe meltdown, offering him items that might comfort him.  I've seen you talk to him with such sweetness when you're trying to help and guide him when he needs to be redirected.  And then something you did last week brought me to tears.

On the 4th of July we went to a parade.  We know parades can be stressful for your brother- the loud noises, the crowds of people- it's all overwhelming for him.  But we need to keep trying, for his sake and to keep normalcy for you and Christian.  Charlie was having a tough time from the beginning of the parade, but was keeping it together quite well.  He sat with dad and Sunny a few feet behind us in the shade.  I stayed with you and Christian on the curb to watch the parade go by.  And then the floats started throwing out candy.  The first big handful you brought back and you started putting several pieces of candy in a bag.  I quickly reminded you that wasn't your bag, it was Charlie's candy bag.  You looked at me as you put the remaining few pieces of candy in your own bag and said, "I know, I don't want him to miss out on the candy."

Sweet boy, you have no idea how proud I was in that moment.  You brought me to tears with your kindness and thoughtfulness. You could have easily put all of the candy in your bag, but instead you had your brother in mind.  And it wasn't only that instance.  You did it again and again over the next hour that we watched the parade.  That level of selflessness in an eight year old astounds me.  In that moment I learned that you care for your brother immensely.  You never saw me crying behind my sunglasses that day.  I wouldn't want you to think something was wrong.  But I can't help but think of all the ways you'll be there to help your brother as you both grow older.  Someone who cares for him no matter his age. I can see that in you and I'm grateful he has you.

I don't know if you'll ever read this.  If you don't, that's ok.  You don't need this letter to know how much you are loved and how much your dad and I cherish you.  Every day I catch a glimpse of the man you will become and I couldn't be more proud.  Reach for the stars, my love.

Love Always,
Mom

Sunny

Sunny is usually mentioned and seen in most posts here, but I thought it would be fun for you all to get to know Sunny a little bit better today.  After all, this blog started because of her.  Sunny is an autism service dog who belongs to our 7 year old son, Charlie.  Charlie and Sunny have been a team for almost 2 years now!  And boy, have we learned a few things since then.  

Sunny loves to work.  She aims to please whoever is working with her and really, really loves her family.  Especially her boy.  Sunny goes wherever Charlie goes.  Since there is such a large size discrepency (Charlie is 40lbs and Sunny is 90), Tyler or I need to act as Sunny's handlers when we're out in public.  But Charlie is always right there by her side.  

Sunny has quite a few important jobs each day.  Most days, especially during the school year, Sunny helps wake Charlie up and get him out of bed.  Charlie is NOT a morning person and having Sunny go in to greet him in the morning works so much better than mom or dad nagging him to get up.  Sunny was trained to respond to an alarm clock.  So, when the alarm clock goes off, Sunny runs into Charlie's room, jumps on the bed and nudges him with her nose and sometimes licks his face.  This usually works really well and gets him up without much complaint from Charlie...usually.

Another task Sunny has is just being present, being Charlie's constant throughout the day to help him with transitions.  Think of how many transitions you go through in a day......wake up and transition to the shower, then transition to getting dressed, then perhaps transition to the kitchen to make breakfast, then another transition from your house to your vehicle where you then transition from home to work. And that's just your morning!  Each transition Charlie goes through is difficult.  It's hard for him to switch gears as quickly as most people to go from one task to another.  Having Sunny with him helps to make the transitions smoother.  Plus we use tons of verbal warnings and prompts to help Charlie know what comes next; "ok, when the movie is done we are going outside" or, "we have 10 minutes left at the park and then we're going home.....5 minutes left....3 minutes left..."

Having Sunny in public with Charlie has been a huge help.  Going on outings in the community are often overwhelming for Charlie- large crowds, loud noises, walking safely in parking lots- it's a lot to handle.  But having Sunny with him gives Charlie something else to focus on and lessens his anxiety. If the outing becomes too much for him, we will often remove Charlie to a less busy area and try to have him calm down in a quieter space with Sunny.  We find that Charlie also walks safer with Sunny by his side.  He's less likely to dart out in front of a car when he's holding on to and focusing on Sunny.  Plus, with "block" and "cover" commands, that positions Sunny in front of Charlie (block)- especially at intersections- or behind him (cover) to help keep people behind him at a distance. 

 

Sunny provides Charlie with deep pressure therapy, daily, sometimes several times a day.  What this means is, Charlie responds well to deep pressure on his body to help him calm down, especially during melt downs.  This deep pressure is soothing to Charlie and helps him to regulate his body again.  So when Charlie is needing it, Sunny has a "lap" command or a "full on" command that either puts half of her body weight on Charlie's legs when he's sitting or positions her fully on top of him when he's laying down.  Both commands work wonders and he uses both.  Deep pressure also helps Charlie sleep at night.  He uses a weighted blanket I made for him, but sometimes asks for more pressure and has Sunny lay on him as well.  Charlie has always had a tough time sleeping since he was born.  He didn't sleep in his own bed until he was almost 5.  We noticed he has always slept better when he is with someone else.  So, having Sunny to sleep with has been a huge help.  She may not stay in the room the entire night.  She sometimes goes back and forth between Charlie's bed and the living room, but one thing we've noticed is when Tyler or I get up in the morning Sunny will always move back to Charlie's bed if she's been laying in the living room.  She starts the night with him and is always there in the morning when he wakes up.  

When we are riding in the truck to go anywhere, Sunny is positioned at Charlie's feet.  She has helped immensely during car rides.  Before we got Sunny we couldn't even ride into Rochester (10 minute drive) without a massive meltdown.  Now with Sunny, Charlie can hang on to her or, most of the time Sunny will rest her head in his lap and we imagine that little bit of pressure on his legs helps to keep him regulated.  There are still travel difficulties from time to time- driving anywhere more than an hour is a recipe for disaster and limits where we go, but for the most part Sunny has made a huge difference in this area.  

Besides being a working dog, Sunny has so much more to her.  She has quite the personality.  She has tons of energy and usually the only way to get the energy worked out of her is to go on a 3+ mile run.  She's goofy, tolerant, patient, and gentle.  She loves to play in the water and swim, loves running around in the yard with the boys and sometimes likes to play fetch- emphasis on sometimes.  She has fun pulling the boys in the sled in the winter, she hates being away from her people and she never roams far when we're outside and she's off duty.  Basically, she's an important part of the family and the best addition to Charlie's life.

Thank You to Our Village

The old saying, "it takes a village to raise a child" cannot be more true and I want to take a moment to shine a spot light on our village and say thank you.  Our village might look a little different than most parents raising children.  Our village not only includes grandparents, cousins, friends, aunts and uncles, but it also includes therapists, special ed. teachers, social workers and skills workers.  These are our people and we couldn't do it without them. 

We're very lucky to have so much family close by willing to help when they can.  The boys have grandparents and great grandparents that are involved and very helpful.  They spoil them with hugs and kisses, give them an abundance of gifts, take them on fun adventures and often take them overnight or for a weekend to either give Tyler and I a break or just take one or two of them to give the boys a break from autism.  They also are respectful of when we need some space to just be a family or to handle whatever situation is going on at home.  To our parents and grandparents who help, thank you.

The boys are also surrounded by a multitude of aunts and uncles, even great aunts and uncles.  These are the people in their lives who are not afraid to be absolutely silly with them, throw out all daily expectations and just be down right silly, creative, imaginative and fun with them.  They spoil them with more chocolate than they know they're supposed to have, let them take the extra cookie or two, wrestle to get some sensory input or let them get away with murder (ok, well not literally).  These are the people who take the time to just be with them whether it be watch a movie or play frisbee.  To all our brothers and sisters who are involved, these are the "normal" activities they need....thank you.

The friends in our life are making huge differences with our boys.  These are the people Tyler and I choose to associate with because they have made our lives better in one way or another.  For Tyler and I these are the people who lend an ear, a shoulder, pass the kleenex, let us vent, meet for lunch, pedicures, a coffee or a drink or lend me their cable so I can actually watch the hockey playoffs.  And for the boys these are the people who invite them over for playdates, let them be absolutely crazy with them, give them time to do the boys things- even play knee deep in the mud or have unlimited amounts of popsicles- yet still understand they can't have the red ones (it's a dye thing).  These are our church friends, our friends from childhood, our fellow autism friends or friends we've met along the way that have become like family.  To all of our cherished friends, you know who you are, thank you.

And then there are the people in our lives that most people don't have in their village.  Some might argue these are some of the most important people.  And they are.  These are the therapists, the social workers, the special ed teachers and the skills workers.  These are the people that are in our home 3-5 days of the week working tirelessly to teach such important skills for Charlie, and admittedly, the rest of the family as well.  These are the people who help us get the tools Charlie needs to make his life just a little bit easier every day.  These are the people who give us resources we might not know about, who take Charlie out into the community to learn skills to be able to tolerate being in the community- in loud and crowded places, who teach him coping mechanisms that he can lean on for the rest of his life, these are the people who help expose him to different social situations so he can know how to interact appropriately with others.  These are the people who have also been hit and kicked just as we have during those tough days, but refuse to back down, and then show up again the next day.  These are the people who have seen us through thick and thin.  They are the people who let Tyler and I vent and actually know what we're talking about when we say our lives aren't like others'.  They've seen us cry, they've seen us angry and they've seen us at the end of our rope when we're totally and utterly burned out.  These are the people who actually get upset when they hear Tyler and I have not been taking care of ourselves, they've become an extension of our family and we would be completely lost without them.  To Charlie's extensive team, thank you.  Thank you for sticking with us and not giving up.

We definitely couldn't do this life without our village and we thank you all from the bottom of our hearts.  We are incredibly blessed by the people we have in our lives.  You all make a difference more than you know.