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.

Riding the Rollercoaster

We're just riding the autism rollercoaster over here.  And I'll admit, we're exhausted.  We went camping at a local county park over the weekend.  Our first weekend out camping for the season.  We figured if it didn't go well or if the weather was bad, we could always head home since we were so close.  The boys have grown up camping.  Tyler and I camped before we had kids and we always wanted our kids to enjoy the outdoors as much as us.  We've had an Airstream camper for the last 12 years that we love and it works well for our family.

All the boys were excited to get out to the campground when we picked them up from school on Friday.  The excitement was quite adorable actually.  They were pumped.  They had their bikes with them, there's a small zoo within walking distance from the campground, playgrounds, and just plain outdoor fun.  But for Charlie that excitement quickly changed into anxiety.  Our routine was different.  We were cooking outside, eating dinner outside- all of which he knows happens when we camp.  But when it comes time for it to actually happen, that transition, those changes, become too much for him.  He tries so hard to keep it together.  The evening got away from us and before we knew it, it was WAY past bedtime.  Cue meltdown.

And then Saturday morning came.....very, very early.  All the boys were awake by 6am.  The rest of the campground, as well as mom and dad, were not.  We did our best to keep them quietly entertained in the camper for a couple of hours with breakfast, cartoons and books.  When we let them go outside they went instantly for their bikes.  It didn't take long before Charlie came back into the camper and was quite upset.  And even now, a day and a half later, and I still don't know what he was upset about.      When he gets to the point where he's extremely upset he has a hard time vocalizing what is going on.  So he had some snuggle time with mom inside the camper to help get regulated.

Mid morning we decided to walk to the zoo and check out all the animals.  It's a small zoo, yet there's lots of walking.  It never fails that Charlie just can't make it the entire way.  He was able to talk dad into a shoulder ride for a portion of the end of our walk.  And yes, Sunny goes to the zoo with us as well.  She was a great help to Charlie throughout our visit- even if some of the animals weren't fans of Sunny.

The rest of Saturday included more bike rides, lunch, games, bikes, snacks, popsicles, playing at the playground and getting muddy.  All of that was interspersed with some tough social interactions with other kids that needed a lot of intervening, coaching and problem solving.  We knew all the boys had ran hard all day in the fresh air and knew it would be important to keep bedtime at a decent hour.  But Saturday wouldn't be complete without a campfire, some dessert and smores!  

We also knew that Sunday would be tough.  The transition from the campground back home is never easy and we were ready for some kickback.  We spent Sunday morning roaming around the zoo once more, but this time Charlie had a tougher time.  Tyler and I were both able to focus on Charlie while the other two boys were able to roam the zoo with family that was with us.  Usually it's Tyler and I splitting up; one of us takes Charlie and Sunny duty while the other is in charge of the other two boys.  The entire hour and a half that we were at the zoo was constant monitoring, following, coaching, and diverting meltdowns.  It was exhausting.  And honestly, this is one part of autism we hate.  It takes so much out of us.  It takes so much out of Charlie and it takes so much out of Tyler and I.  After we're done dealing with a long period of being constantly on guard, we're spent.  We know we still need to try and be social (especially since we were camping with others), but by this point all we both want to do is retreat.  When autism exhaustion sets in like that we don't want to be social.  We don't want to sit around and carry on "normal" conversations.  I'll admit we sometimes don't even want to be around others.  

Soon after the zoo we started to pack everything up to go home.  We didn't even get out of the campground before the transition meltdown began.  And it lasted well into us getting home and starting to unpack (hour or more total).  This is when I started to panic.  That's when I let myself remember we booked our Summer solid.  We wanted to do more camping this Summer and I'll admit it kind of snow-balled on us.  We have two camping trips scheduled in June, all of July is booked (including a long weekend for the 4th) and every weekend in August until the boys start school the week before Labor Day.  That even includes a week long vacation of camping.  Yep.  I panicked.  How are we supposed to get through the Summer when every weekend will undoubtedly look like this?  When I know we'll have meltdown after meltdown to endure.  And this is amidst Summer....one of Charlie's hardest times!  What were we thinking?!  Overall this camping trip went well, but there's large moments like this that are very challenging and take a lot out of us. 

We know there's not much more we can do but take it one day at a time.  One camping trip at a time.  I've told Tyler that I'm ok if we need to cancel a weekend trip and swallow a reservation fee or deposit on a campsite.  Because our sanity is worth much more than a deposit on a campsite.  I'm ok if it means more down time at home during the week.  I know we have great support with Charlie's therapist and skills worker who can help Charlie and us work through these challenges.  So I guess for the time being we take it one step at a time.  Maybe this Summer it will mean taking it one hour at a time.