Small Victories

We'll take victories when we can get them.  The last couple days proved to be busy once again.  I was gone most of the day Saturday helping a local organization I am part of and Tyler had the boys and helped his parents at their house.  I knew we had a birthday party to go to in the afternoon and was nervous as Charlie has had a really good couple of days (minus the hour long melt-down he had Friday night).  I was worried the birthday party would be the breaking point.  But, we gathered everyone up and went anyway.  Charlie did amazingly well.  He had a small moment where he needed some cuddle time with dad, but otherwise he was among the other kids playing and having fun.  No meltdowns during or immediately after the party....VICTORY!!

We left the party a few minutes early so we could get to church on time- we like to go to the Saturday evening church service when we can since it's a little easier on our schedule and tends to be a little less people there.  After service on Saturday evenings our church offers a fellowship meal that anyone can partake in.  We tend to take this time to enjoy the meal offered- again, less stress on our schedule of having to rush home and make dinner quickly before bed.  However, tonight proved to be a little more challenging.  Charlie was clearly done for the day.  He couldn't sit at the table, couldn't focus on eating and was having a hard time listening to direction.  I don't blame him.  It wasn't the usual dinner crowd at church this time.  The high school kids were putting on a bake sale at the same time to help raise funds for their upcoming missions.  There were MANY more people there than usual, there was a lot of movement and it was noisy in there.  To anyone else they may not have even taken notice to it.  Tyler ended up taking Charlie out into the hallway to lessen the sensory overload for him.  Unfortunately Charlie was unable to eat his dinner (it's not uncommon- meal time is hard even at home).  I had to give him kudos though- making it this far in the day before having any noticeable difficulties.  And no meltdowns!  He was so sensory overloaded, Charlie wouldn't wear his coat and had a hard time laying in bed to listen to dad read a bedtime story.  Instead, he spent some time decompressing in the living room with his trains.  He eventually did join the bedtime story.  It's moments like these that I need to remind myself that he's not trying to be difficult.  He's not trying to be oppositional to bedtime, but instead finding his own way to calm down and decompress after the busy and overloaded day.

Knowing we're in the process to get Charlie a service dog, it's challenging moments like these that make me excited to see how Charlie's dog can help him in these moments.  The service dog will help be a calming presence in situations where Charlie gets anxious or nervous.  We're looking forward to the dog being able be help Charlie stay at the dinner table and be able to focus in larger crowds.  We're excited the service dog will be there to help Charlie calm down at night, provide deep pressure input by laying on/with Charlie in bed and help him decompress from a busy day.

Survival Mode

When Tyler and I found out we were having twins we were so nervous, scared, overwhelmed, and so many other things mixed in between.  I mean, we had a 7 month old who we had barely just met!  Once the shock set in we went about our life- preparing for our world to be turned  upside down with 2 babies at a time instead of just one.

Easton

My pregnancy with the boys was healthy.  There were no warning signs that anything was wrong and they were growing, healthy and strong.  But at only 5 months along in the pregnancy things started to feel different.  Being a twin pregnancy I had a few more doctor's appointments than I did with a singleton pregnancy.  At one of my appointments the doctor examined me, did an ultrasound of the boys and told me I needed to go on bedrest at home.  He wasn't alarmed that anything was necessarily wrong, but noticed my body was more stressed than it should be at 5 months along (HELLO....I'm 5'1" and have 2 babies growing inside of me.....of course my body is stressed!).  Being on home bedrest also meant I had a lifting restriction....I could no longer pick up Easton as he was over my weight limit.  This made life a little more tricky.  Of course we had awesome family and friends that would come to help if Tyler was not around.  So, for a few weeks I was on home bed rest, trying my hardest to follow instructions.  Until one day, Tyler was out of town helping a friend and I was home with Easton on my own.  A lot of our family was busy with a birthday party that day but a friend came over with her daughter for a little bit to help.  After awhile Easton laid down for a nap and our friends left.  I hadn't been feeling the best and decided to lay down to see if I would feel any better.  An hour of resting and I still didn't feel right.  I decided it would be best if I went to Labor & Delivery to get checked out.  Better to be safe than sorry.  Tyler was still gone so I asked family to take Easton so I could go in to the hospital.

Seriously, can this kid get any cuter?!

Once at the hospital I was checked out and told they would be admitting me for hospital bed rest as my water could break at any moment.  NOT what I was expecting.  So, there I sat in the hospital willing my babies to stay inside as long as possible.  It was only about a week later, at 27 weeks, and the boys were born.  The boys' entrance into the world was a little chaotic and pretty stressful.  They required breathing support and were immediately hooked up to many wires and monitors to watch their vitals.  Immediately Tyler and I had to learn to live in survival mode.  I stayed in the hospital for several days recovering and when I was discharged we spent our days split between our home- spending time with Easton as much as we could and the hospital being with the boys as they learned how to breath and grow.  This was our routine for 3 months; getting up in the morning, taking Easton to daycare, Tyler dropping me off at the NICU, him going to work for the day and then coming to pick me up to go home and spend the evenings with Easton.  We did what we needed to keep life as normal as possible for Easton but also spend time with our babies and bond with them.  We were in survival mode.

31 days old and they were finally together again after being in separate isolettes

Then came the day for Christian to be discharged.  Charlie stayed in the NICU for a couple more weeks as there were some growing issues yet.  Boy was that a hard day to take one baby home and leave the other one at the hospital!  I would still go back to the NICU daily to be with Charlie and of course Christian would come with me.  A couple weeks later we had both boys home.  But even then it was near constant doctors appointments and check ups and about a month after being home Charlie needed surgery- so back into the hospital we went for another week.  Still, survival mode was our life.  We rarely slept.  I lived on coffee (who am I kidding, I still do) and was off of work for nearly 9 months.  When I did go back to work it was all about trying to find a new balance.  Luckily I was able to reduce my hours and go back to work part time.  That helped a little.

Size reference- 3 1/2 mos old- not much bigger than dad's shoe

As the boys grew and got a little older we started seeing little things in Charlie that worried us.  He never slept through the night, he was always fussy, constantly needed to be held- moved- rocked- you name it.  He got a little older and began having long-severe tantrums, head banging and putting holes into our walls.  We still didn't sleep- in fact it seemed to be getting worse.  We were still in survival mode.  Doing what we could to keep our house running as smoothly as possible as well as keeping our jobs and trying to figure out one finicky little boy.  I'll admit, we were stressed.  All the time. We were in survival mode.

It was when Tyler and I were talking recently that I realized we are still in survival mode.  5 years later and we are still just trying to get by, taking everything day by day.  We never feel like we are "caught up" either at home or at work.  Between school schedules, business schedules, church schedules, and therapy schedules we miss things.  Things get dropped- more frequently than I'd like to admit.  If you've been to our house recently you may have noticed the gigantic whiteboard calendar in our living room.  We needed to implement this to ever stand a chance at some-what keeping everything straight.  Add in meltdowns, sleep problems, eating difficulties and sensory issues and what do you get?  Survival Mode.

We'll be heading into summer soon.  I thought maybe this could be a time for us to slow down.  But looking at our calendar, we already have so much going on- and that was before I added swim lessons to the calendar!  Survival mode continues.  

Introducing.....

Last night we had the opportunity to meet more with Mike, the trainer for Charlie's dog, ask more questions and go over what the next several months will look like in training Charlie's dog.  At this meeting we went over paperwork that Mike requires of his applicants, talked about Charlie's specific needs and some "wish list" items we want the dog to be able to do for Charlie.  Our wish list will give  Mike an idea of where to start with specific training needs.  We will be working on completing the paperwork and finalizing our wish list in the coming days.  Once we can get this information back to Mike he will be able to write up our contract.  Our next meeting with him will be to review the contract, sign and give a downpayment.

Based on the information we have given Mike so far he already has a dog in mind for Charlie.  A dog he has been doing basic training with the last several weeks.  We actually met this dog a few weeks ago when Mike initially came to our house to meet us.  Charlie was in pure bliss when Mike brought the dog into the house to meet us once again......

We'd like to introduce you to Sunny!

Sunny is a 1 year old, female German Shepherd who will begin her service dog training in the next few weeks.  She has been undergoing basic obedience training the last couple weeks with Mike.  She weighs approximately 80lbs. and is as sweet as sugar.  

The boys all got to play with Sunny and get to know her a bit tonight.  Charlie was in love, but then, we knew this the first time we met Sunny a few weeks ago.  

Kisses from Sunny

Charlie loved seeing Sunny again!

Even though Mike has chosen Sunny for Charlie, there still could be some "what-ifs" hanging in the air.  What if Sunny can't handle the training or do the tasks she is needed to do.  What if she gets a serious injury or illness before training is done.  What if her personality just doesn't fit to be a service dog.  These are all possibilities.  We hope that Sunny has what it takes to be a service dog because I think Charlie has a heart for Sunny already.  But Mike knows there are possibilities of dogs not working out, he's experienced it in his years of training service dogs.  When Mike starts training a service dog he actually has 2-3 picked out that he'll start training with.  That way, if one of the dogs just doesn't work out for whatever reason, he has another option to fall back on. 

They both had such interest in each other.  Charlie introducing Sunny to one of his stuffed animals

Sunny was such a sport and let Charlie try his TMNT hat on her

Things are feeling very real.  This is really going to happen for Charlie and we couldn't be more excited!  We are so incredibly thankful to Mike for taking us on.  We look forward to having you join us on this amazing journey that we are so blessed to be on.

There is a Difference

I want to talk about service dogs for a minute.  Since we started our service dog journey there seems to be some confusion about the role of a service dog or the difference between a service dog and a therapy dog.  Some people appear to use the terms interchangeably.  Let me clarify, because there is a difference.

The Americans with Disabilities Act (ADA) defines a service dog as "individually trained to do work or perform tasks for people with disabilities."  Examples can include leading someone who is blind, alerting a person who is about to have a seizure, calming a person with PTSD or many more.  A service dog should not be looked at as a pet, as they are a working dog.  The tasks the dog has been trained to do must be directly related to their owner's disability.  If the sole purpose of the dog is to provide comfort or emotional support, they do not qualify as a service dog under ADA standards.  

I like to use the graphic above as a good reference for people.  Charlie will be getting a true SERVICE DOG, listed in the left hand column of this graphic.  His dog will be specifically trained for his needs, the dog will be covered by ADA- meaning Charlie will be able to bring his dog wherever he goes, including restaurants (man oh man it will be nice to hopefully eat out as a family!).  Charlie cannot be denied access to places in public strictly because he has his dog.  If he is denied access, the establishment doing so could face penalties or fines.  

Now, the difference between a service dog and a therapy dog...when you think therapy dog, think of the sweet natured dogs they sometimes bring into nursing homes, schools, or hospitals to provide comfort and relief to those people.  Therapy dogs are not covered by the ADA.  Yes, they need to be able to tolerate a variety of experiences and environments, and likely have been through obedience training.  But they generally provide support to a numerous people, not just one specific person.

There are also Emotional Support Animals.  These animals are also NOT covered by ADA and may not even have any training.  But their primary purpose is to provide emotional support through their companionship with their owner. These animals are usually utilized by people to help alleviate symptoms of a mental health or psychiatric disability.  Some people using Emotional Support Animals use dogs, some use cats, or other types of animals as well.  

Again, Charlie's dog will be specially trained for his needs.  Some things he is needing include calming or preventing self harm during a meltdown, help ease anxiety, help with sleep, waking him in the morning (man, mornings are tough at our house....ha, and so are nights!) and transition from task to task.  These are just a few ideas we have in mind.  We know there will be more tasks added to the list as we talk more with the trainer.  

We hope this helps clarify the difference between a service dog and a therapy dog.  We look eagerly ahead to this week when we will be meeting with our trainer again and moving forward to have a dog trained for Charlie!

"He doesn't look autistic"

Since awareness and education are partly why we wanted to start a blog, I thought I'd touch on April being Autism Awareness month.  There seems to be a month for everything these days, right?  Breast Cancer awareness month, Irish Heritage month, Women's History month, Adopt a rescued Guinea pig month (seriously, it's out there).  And honestly I never knew there was an Autism Awareness month.  But my thoughts around this....shouldn't we be educating and raising awareness every month?  Not just in April?  Well, I hope we can serve that purpose through this blog even beyond getting Charlie's service dog. We want to be a light for others who may feel lost, broken, confused, frustrated, worn down, or alone on their Autism journey. 


Maybe you've thought it.  Maybe you've said it.  "He doesn't look autistic."  We've actually heard this many times, and no we don't take offense to it.  Yes, when you look at Charlie he looks like any other little boy.  And if you're around him for short periods of time you may wonder what we're talking about when we say Charlie has Autism. It goes a lot deeper than how he looks.  And yes, he might seem fine for short periods of time.  The truth is, he's smart. He can hold himself together quite well for a long time.  And we have seen this over and over and over again.  Charlie had been going to the same daycare for over a year before our daycare provider even started seeing any of the behaviors we were warning her about.  She couldn't understand what we were talking about (and that's understandable when everything seems fine!).  He does really well at school.  So much so, they have never seen a lot of what we see at home.  Sure, they see some rigid behavior, not wanting to cooperate, but they have never seen the hardcore stuff we deal with on a daily basis.  Even some of our family has yet to fully understand what we deal with!  This baffled me for the longest time.  I didn't understand why my boy was fine in some situations but as soon as he got home, he would totally melt down and would be inconsolable and destructive for hours.


It's quite common for kiddos with Autism to be able to hold themselves together in certain situations and make it seem like they are doing fine.  But as soon as they get home or in an environment where they feel completely safe and comfortable, they will let down those walls and release everything they've been feeling while they've been away from home.  This happens with Charlie most days of the week when he gets home from school.  It happens on the weekends or holidays when we're at other people's houses for longer periods of time.  We often think- "great, we all had an awesome time.  Wasn't that wonderful? Maybe we're making strides in being able to do more things outside of the house!"  But then, BAM....we get home and the meltdown begins almost immediately.  Sometimes it even begins before we get home and it starts in the car. And it's usually when we're in the throes of these meltdowns that my husband and I vow to never go to another social gathering again.  It's horrible.  It's miserable and it's frustrating.  And that's only how Tyler and I are feeling.   I can't imagine how much more horrible it is for Charlie.  He doesn't want to feel like this.  He doesn't want to act like this.  He can't help it.  This is how he communicates with us when he's feeling overwhelmed, frustrated, and anxious.  He doesn't know what else to do. But part of his weekly therapies include learning how to deal with these feelings in a healthier way.  His service dog will be able to provide a calming presence and help ease anxiety when Charlie is feeling like this. 

If you are with our family for family functions, social gatherings, etc please don't be alarmed if we need to leave suddenly or can't stay as long as we had hoped.  Tyler and I try to keep a close watch on Charlie's demeanor and hope that we can intervene before he starts to show signs that he's getting overwhelmed.  But sometimes this isn't always possible and we push it too far which means we need to leave ASAP.  Many times we choose to decline invitations to do things with our friends and family because we just know it won't be a good situation or if Charlie has had a particularly rough day/week.


"Sorry, we can't be there, Charlie has had a bad day," "I can only stay a short time, Charlie is waiting for me," or "I have to leave early, Charlie is having a tough time and won't go to bed."  Seriously, our life is so incredibly different than most people's and we're not using him as an excuse.  It's just that we have to do things so differently than most and if we don't take certain measures, everything will spiral out of control. Be patient, be understanding- it really goes a long way.

And there is much, much more beneath the surface that goes on that many people don't see. Crossing my fingers this weekend goes well. I am away from home for the night and all day tomorrow and this is always challenging for Charlie. Mom is one of his comfort items so when I'm gone it's hard for him to stay regulated. We've been prepping him all week for this and even practiced some ways he could tell dad if he's feeling sad or missing mom. Wish us luck!

Astonished

Less than a week. That's how long I've done this blog and started fundraising efforts for Charlie's service dog. And in that time I've been blown away by the response from people near and far. From a ton of our family and friends, but also from complete strangers. I hadn't really shared our fundraising page until last night but despite that people were hearing about it, sharing it with others and already donating. And I'm completely astonished by this. I wasn't sure what to expect. Maybe that's because I know not everyone can donate, and I'm ok with that! I totally understand that. But I'm so incredibly thankful for the response we've gotten so far. We don't even know some of these people who are donating or chiming into our blog, yet here they are. Pouring their hearts into something so important to a little boy- something that will be life changing for him. THANK YOU!

Please continue to share our blog with others, share our fundraising page. We want others to benefit from our blog posts; either by being uplifted, having a little laugh, feeling supported, learning about service dogs, being able to relate to our story or even by learning a little bit about Autism. Whatever it may be, we want others to find value in our blog. So share away!!


Our fundraising page can be found here-please feel free to share with others:

https://www.youcaring.com/charlieking-801310

A New Hope

If you've read our previous posts you know we've been looking into a service dog for Charlie for awhile.  And are currently on a really long wait list to get a dog.  Besides looking at many other service dog groups around the US, we've just prayed.  We pray every day that we can find a great dog for Charlie that can help him each day.  And pray that we have great people to work with in the process.

One day a few weeks ago we had the TV on in our kitchen as I was making dinner.  My husband was tuned in to a local news station.  I haven't been watching the news lately...it makes me sad, angry, upset, and I don't want to feel that way- so I've been avoiding the news.  Plus I really don't have time to watch it anyway.  I really wasn't paying attention to what was on there.  I was lost in thought as I made dinner for my family.  But something caught my attention.  I'm still not even sure what it was that grabbed me from my thoughts, but before I knew it I was glued to the TV as a local man talked about how he trains service dogs.  I was so surprised.  I hadn't heard of anyone local that does this, the closest one being the group where we were on the 2-3 year wait list.  After I watched the segment I immediately got online and contacted the news station.  I knew I needed to contact this man.  The news station got back to me very quickly and gave me his website info.  I found his website and sent him a message that same night (a Thursday).

Now, I wasn't expecting much.  I figured the guy wouldn't get back to me for a couple weeks.  No problem, I was certain he was busy.  While I was working from home the next morning I got a call from an unfamiliar number.  I had been getting a lot of junk calls from solicitors so I almost didn't answer it, but something pushed me to pick up the phone.  And I'm so glad I did!  It was the gentleman they interviewed on the news.  I was blown away that he would contact me so quickly.  He talked with me for a half an hour to get our story and what we were looking for, he answered all of my questions and by the end of the conversation was asking to come meet us.....the very next week!  I was almost in tears.  This was the best feeling I had had in talking with numerous service dog trainers.  I couldn't believe how this all came together in under 24 hours.  I knew we still had a lot of work to do- and still do- to get things set up but I felt this was a step in the right direction.  I had hope this would work out.  And I knew this wasn't a coincidence.  I knew God's hand was in this.  I've told my husband from the start that God has a plan, we didn't know what it was but that we needed to be patient and trust.

Last week we met with the trainer.  He came to our house and sat with us for well over an hour, answered our questions and got to know Charlie and his needs a little bit.  Since he is a smaller operation he said he really doesn't have a wait list and could start training a dog for Charlie in May.  I was shocked.  I clarified "this May, like in a couple of weeks?? Or May, as in next year???"  Would not have been surprised if he said May next year.  But nope, shocked once more he clarified that he could start in a couple of weeks.  I was so grateful that I was almost brought to tears.  The hope was just piling up the more we talked with this man!  At the end of our meeting he asked Charlie if he wanted to meet one of his dogs he had with him.  Charlie's eyes got really big and he said yes right away (no surprise there!).  The trainer brought his dog out who Charlie fell in love with instantly.  A 1 year old female German Shepherd who let Charlie hug her and play with her for quite some time.  I was instantly reminded how important this is to do for Charlie.  He needs this dog.  He needs the comfort, the companionship that this dog could offer.  He needs the reassurance and the confidence this dog could bring.  He needs this dog to better function each day.

We look forward to more meetings with the trainer in the coming weeks and are happy you have joined us on our journey

*I know many are wondering the name of the trainer we are using.  We have elected to keep names out of our blog for the time being since we are in the very beginning stages of working with him and have yet to have a solid plan in place to work with him.  Thank you for your understanding as we navigate the early workings of this very important relationship!*

This is a friend's dog we visited last week. It's amazing how therapeutic dogs are for Charlie!

Out of Routine

Today was the last day of Spring break.  No school for the last 6 days....and being out of routine is starting to wear on Charlie.  Throw in a holiday and the poor kid doesn't know what to expect.  I was home with the boys as I always am on Mondays and our day started out pretty decent.  Early on in the day Charlie voiced his need to go to the park.  I could tell he was starting to get worn down, a little on edge- getting frustrated from the smallest things.  I agreed, yes, he definitely needs the park.  And when I say NEED, I truly mean he NEEDS the park.  Remember I talked about Charlie's sensory issues?  Well, the park is the perfect place for him to get the sensory input his body needs.

Charlie's body doesn't perceive sensory input like the rest of us do.  It took me a long time to learn and understand this about my boy.  I was so confused when he was younger why he was constantly moving, running, jumping, banging into objects and other people, loves deep pressure/or having tight squeezes, or otherwise loved to be in constant motion at ALL TIMES.  When I began learning more about his sensory needs it was very clear he is a sensory seeker.  He seeks out certain feelings or sensations because his body is under-responsive to these things.  So it's almost like his body craves more sensations.  So yes, the park is a great place for him to get the sensory input he needs.  This kid could swing all day if you'd let him (and trust me, he's been asking to go to the park 3-4 times/day lately.  As soon as we get home from the park he's begging to go again).  Climbing, sliding, running, jumping, twirling....all things you do at the park helps Charlie to feel calm, secure and connected to his surroundings.

It's tough for him to get started on the monkey bars since he's so little, but once he gets going on them he does pretty well.  That swinging motion and the pressure on his joints in his hands and arms is the perfect activity for him to do.  I have a feeling we'll be spending a large portion of our summer at the park this year.  Which is fine, totally fine, especially since we have 2 within walking distance from our house.  

The park can be considered part of Charlie's "sensory diet."  A sensory diet- no not a food diet- rather, activities we do with Charlie to help him feel safe, calm, relaxed and happy.  We learned about his sensory needs when he was in OT a couple years ago.  We were fortunate enough to have an amazing OT that helped us learn and taught us things we could do with Charlie at home to help him.  If any of you have been to our house you know we have a "crash pad" or basically a gigantic pillow that Charlie can use to safely jump/crash into when he needs that input.  Sometimes he does a free fall from the couch when the crash pad is laying on the floor next to the couch.  Usually when he needs this input he will free fall over and over and over again until his body is satisfied.  

Other things we use in Charlie's sensory diet are a weighted blanket, heavy "work" or heavy lifting (I know, sounds like child labor- but believe me it's not).  Rolling him up tight in a blanket, giving tight hugs, joint compressions (please don't do these unless you've been properly shown how to do them), rocking in a rocking chair, tickling (really gets him to do deep breathing and work those tummy muscles), brushing with the Wilbarger Brushing Protocol, hanging him upside down and slightly swinging him. Seriously there are so many things we do to help him each day.  Some of these things have become second hand to us and we don't even realize we are doing them with him as a therapeutic benefit anymore. And it did take us a long time to figure out what worked for him.  We had the help of an amazing OT and I would encourage anyone needing more information to reach out to someone in that field to help you figure out specifically what your kiddo needs.  Because what works for my Charlie may not work for your child.  Perhaps your child is more sensory defensive and won't like these fast paced, crazy motions like mine does.  Each child is a little different in what works for them.  

1st weighted blanket when he was 2- made by mom

Charlie's current weighted blanket- also made by mom

So yes, if you ever come to my house don't be surprised that I'm the mom who doesn't mind if the kids slam themselves into the crash pad.  Or don't be alarmed if you drive by our house and see my husband in the yard holding our child upside down by his feet...it's therapeutic!  We're in the process to hopefully get an indoor swing for Charlie along with some other sensory rich toys/tools that he can use at home.

He could ride the Carousel all day

Loved the weight of his dog while he slept

Tell me...if you have a child with sensory needs- are they seekers or avoiders?  What's in your child's sensory diet?

A Day in the Life of Autism

Whoa.  Just looking at the title makes me overwhelmed.  Where to start?  There can be so much in just one day..... SO MUCH!  And let me preface this post by saying our day does not necessarily describe another family's day with Autism.  Each kiddo is different, their struggles are different and each family's experience is slightly different.  With that being said, yes, there will be similarities as well, but one family's experience does not encompass every family's experience with Autism.

Our son Charlie.....well, he's amazing.  Simple as that.  He has shown us how to experience the World in a different view.  Not a lesser view, not a wrong view, but different.  This little boy has the biggest and most caring heart of anyone I have ever encountered in my life.  He's smart- holy moly he's so incredibly smart, he's funny, adventurous, sweet natured, handsome (yeah, so I might be biased), loves to snuggle, is spunky and strong-willed (Lord help us).

I've mentioned in a previous post that Charlie needs as much routine as possible in order for his day to go smoothly. Well, you might imagine that's hard to do day in and day out. Life throws you curveballs and you've got doctors appointments, days off of school, holidays, etc that can easily throw a wrench in your perfectly scheduled day. We try to prep  Charlie as much as possible if our plans have changed or if there's something different in our week that's coming up. However, no amount of prepping and planning can sssure things will go smoothly. He gets stressed when things don't go as he thinks they will and stress really throws him for a loop. A few months ago we were on our way to church. We were running a few minutes behind so my husband decided to take a different driving route, a route that's a little quicker. As soon as my husband turned left out of our neighborhood instead of right, Charlie got nervous. He asked where we were going and when we assured him we were going to church he went straight into meltdown mode. This wasn't our normal route and he knew it. It's only a 10-15 minute drive to our church but the entire time there was kicking, screaming, head banging against his car seat, trying to unbuckle his car seat, scratching himself......we honestly didn't think it would be a big deal. We guessed wrong. It's little things like that that can throw his whole day off. Days off of school...well, he's either at home or at daycare on those days, both places he's comfortable at and knows well but it's apparent as the day goes on that he's uncomfortable, that something is just off- more irritable and harder to keep focused.

Getting dressed in the morning can be a huge battle. We've come to know which clothes he likes over others so that helps but some days nothing feels right to him and we end up going through his entire drawer just to find something that "feels ok."  Season changes can be hard. Going from Fall to Winter is the worst because he hates wearing a Winter coat. It takes several weeks to get him acclimated to the new gear again. The past couple weeks have been tough for him to understand that it's not quite warm enough for shorts. But some days I'm tired and just can't battle it. You know the saying "choose your battles wisely?" Yeah, well I'm beginning to think that was quoted from an Autism parent.

Every parent argues with their children about eating their vegetables. But for us eating is a chore in itself. Charlie is very particular about his food and we haven't quite figured this one out yet. We wonder if it's a sensory issue with different food textures but he likes both soft and crunchy foods. If we would let him eat noodles at every meal he'd be in heaven. Getting him to try new foods is like trying to shove a square peg in a round hole. It's nearly impossible. And then there's the challenge to get him to actually SIT while trying to eat. He's normally up at the table for a few seconds and then running around. The focus just isn't there.

Smoothie face! We try to sneak in a lot of nutrition in fun smoothies!

Before we had kids Tyler and I were pretty active, liked being on the go, traveling, outside, camping, out with friends and family, etc. our oldest son didn't slow us down much but as soon as the twins came along things changed a bit. They were 3 months premature, spent 3 months in the hospital before coming home and then were still very small and sick when they came home. That definitely slowed us down. But we figured as they grew we'd be active with them again. We knew we wanted to keep camping in the summers, envisioned family vacations and trips, traveling to places we had yet to be. But that has been very very difficult. Did I mention Charlie needs routine? Yeah, traveling is hard to do when you need routine. Sleeping in weird places- especially when sleep is already hard to come by, not really having a schedule when you're on vacation. Even a short trip into Rochester- a 10 minute drive for us- can be excruciating. There's a lot that overwhelms Charlie by being in the vehicle. Many times he needs noise canceling headphones to help him get through. A lot of times I need to wrench my arm back to the back seat to hold his hand. That's just a car ride....I can't even begin to imagine what a plane ride would do to him.

One night recently when this picture was taken at 12am. He couldn't go to bed until his trains were lined up perfectly.

Sleep is hard to come by in our house. Now, sleep was a very early indicator for us that something wasn't right. When he was a baby he would only sleep a few hours at a time. Yes, I understand that's normal for babies, but even at the age where most start sleeping through the night, Charlie didn't. When his twin brother began sleeping through the night I thought- great, Charlie will start doing the same any day now! Boy was I wrong. Charlie just started sleeping through the night less than a year ago. He was 4. Before that he would be up 1-2 times a night for severa hours at a time.  Just awake. When he was very little it involved screaming episodes. We couldn't figure out what was going on with him. And no, it wasn't night terrors. He did that for a couple years when eventually the screaming stopped but he'd be up. We even went as far as having him do a sleep study, which told us nothing.  Tyler and I would take turns being up with him or if I was up with him the majority of the night I'd go back to sleep as soon as the rest of the house was up for the day....but that could only happen on weekends. During the week we still had jobs to maintain. I'm pretty sure the majority of my body is made up of caffeine. If you know me well you know coffee is my best friend. Even now when I say he sleeps through the night it isn't perfect.  Most nights he has a very tough time settling down to go to sleep. It's not uncommon for him to be up at 10pm still. He's not getting the amount of sleep his growing body and brain needs. But we just take it one day at a time. With most things at our house, just one day at a time.

Charlie was able to calm down better when Tank would sleep on his legs

This is just a small glimpse into our life. Through the life of this blog I will give more examples but for now this is a start.  I know some of you may be thinking that all kids can be picky like this or have tantrums daily.  The difference with Charlie is these things don't happen and then we move on with our day....these things impact his functioning on a daily basis.  These are areas where a service dog can help. The dog will help with Charlie's anxiety, in big crowds, will help him transition smoothly throughout the day, with sleep, less stress being out in the community and hopefully traveling too. We're really excited that there may be some hope to help our sweet boy be more comfortable every day.

Where We're Going

The year before Tyler and I got married we got the opportunity to get a puppy.  We were so excited.  Lots of new beginnings for us back then.  We grabbed that opportunity and brought home a sweet boy we named Tank.  He was our new "baby" that we could put all of our attention and energy into.

We spent a lot of time training Tank, first basic obedience classes and then a little later he and Tyler took a more intensive course.  We were so glad we took that time to do that with him because he was so good.  Of course, he was still young and had a ton of energy and sometimes got himself into trouble, but what dog doesn't?!

When we found out we were pregnant with our first son we took every precaution we could think of to make sure that transition would be smooth for Tank.  Before Easton and I came home from the hospital, Tyler took home a baby blanket that Easton had used and let Tank get used to the smell, prepping him for our new family member.  When we brought Easton home we knew right away Tank would be fine.  He was interested, he was curious and was always cautious around him.  As Easton grew and became more mobile, Tank was never bothered by him, would let him crawl around by him and even on him (no worries, we never left them alone together- you just never know!).  So when we found out we were bringing 2 more babies home, we never even worried how Tank would be around them.  Besides, he was a pro at being a big bro already!

As Christian and Charlie grew and became mobile, it seemed as though Tank had grown even more patient and calm when the boys were around him.  And it was amazing to see the bond he and Charlie had, even really early on.

Pals from the start

Tank was the type of family dog that did everything with us.  He was both and inside and outside dog.  He loved roaming in the Summer and being inside and cozy during the winter.  He loved camping, going on walks and taking the boys to the park.  No matter what we were doing, he always seemed in tune to what Charlie needed, especially in the last couple of years.  He would wander Charlie's way when he was having a meltdown, sit next to him and let him hug him or pet him to calm down.  He even got to the point where he would sleep with him at night and even lay on his legs to give him some deep pressure sensory input that Charlie so badly needs.  

Never far from each other

On this night Tank had started the evening on his bed int he living room, but knew Charlie was having a tough night and went in to comfort him without being prompted

It got to the point where Charlie started to heavily rely on Tank to help him stay regulated or to calm down when he was upset. And it was over a year ago that Tyler and I started a serious conversation about what will happen when Tank isn't around.  Tank was getting older and it was apparent that he was really slowing down- wasn't able to do a lot of the things he used to do.  It was then we decided to look into a service dog for Charlie.  

Our sweet boy Tank on his last day with us

We didn't know what that would entail or where to even start, but we knew we needed to act on it sooner rather than later.  Not sure how much time we had.  And I'm glad we started looking into it when we did.  This February Tank's health took a drastic turn very quickly.  Within a matter of a day he could no longer walk and we had to make the very hard choice to put him down- we did not want him to suffer.  We had been talking to the boys about this, know it would happen some day, so they were prepped a little bit.  However, it did not make it any easier to lose our sweet friend.  It was hard for all of us, but it continues to be extremely difficult for Charlie.  Luckily, in our search for a service dog, we recently had some really exciting news........

Where We've Come From...

For those of you who do not know us, let me give you some background.  Our son Charlie was diagnosed with Autism at the age of 4.  We knew well before getting the diagnosis that something was a little off.  Even as an infant Charlie had major sleep issues.  He didn't start sleeping through the night until he was 4 years old, and even now, it's not consistent.  When he was a baby he was never content, always needed to be held, moving, held facing forward so he could see everything going on. But even then, he was fussy and just couldn't be satisfied.

It was really easy to compare him to his twin brother who was completely opposite, but we knew we couldn't base anything off of his twin, because let's face it...even identical twins can have polar opposite personalities.  However, we did have experience with our oldest child and of course being around other babies as well.  Charlie has always been very different.  At age 2 we began working with the Birth to 3 program for Early Intervention services.  That was great, gave him some extra support and attention in areas he was behind in.  However, they assured us what we were facing wasn't Autism, because our son was able to make eye contact and he was social- he would interact with people.  I didn't question them, what did I know about Autism? He then began Early Intervention Pre-School at age 3 and now he will be planning to go to Kindergarten this Fall 2017.  So by age 5, Charlie had already had quite the adventure.

At an early age we could see some big warning signs.  His poor sleep was one of them.  Another was the way he went from completely calm and playing to outrageously upset within seconds and most of the time there was no indication of what would set him off.  And then began the head banging.  When he was in one of his fits he started banging his head on our walls.  And this wasn't just your normal, toddler head banging...it was the put-holes-in-the-walls type of head banging.  Holes in sheetrock....by a toddler!  It was disturbing and when we would bring it up to our Pediatrician he brushed it off and told us some head banging was normal.  It wasn't until we got some videos recorded to show our Pediatrician what we were talking about, when the Pediatrician realized we were talking about something very serious.  This began the very long road to find our boy some help. We didn't know what we were up against, but we knew something wasn't right.

We started at Mayo Clinic in Rochester, luckily right in our back yard, and went to see a Developmental Pediatrician.  Several visits later and Charlie began PT and OT services but no idea on what was really going on with him.  He eventually completed a sleep study that showed nothing.  There was no reason why this boy was not sleeping!  We really were getting no where with Mayo.  It was our school district that was actually the most helpful in finding some support for Charlie and our family.  We got hooked up with a social worker within our local social services who then referred us for some individualized and family therapy services.

Finally, after navigating this strange road for a couple of years we felt like we were finally getting somewhere.  We had people working with us that listened, seemed to understand the difficulties we were facing and were dedicated to helping us find solutions.  We have now been working with this team of people for over a year and a half and we couldn't be happier.  It was with this therapist that we decided to have further testing done.  And through that testing, found Autism.  It was with this diagnosis that we learned that there are so many different levels of Autism.  Autism isn't just hand flapping or non-verbal.  No 2 kids with Autism are alike.  Kids with Autism can do well with eye contact and they can be social!  Others may have more difficulties in that area.  Some are verbal, some are not.  Just like each person in this world has their own personality, talents and struggles....so does each kiddo with Autism.

Like I said before, we had speculations.  We knew something was up, but didn't quite know what.  So the actual diagnosis wasn't really a surprise, but it was still a punch in the gut.  Words that are still hard for my husband and I to swallow.  My heart is pounding even as I write this, but I know we need more education, more awareness within out communities about Autism, because I believe it's still largely misunderstood.  So, here we are, trying to raise more awareness, educate others so that people can understand and hopefully be accepting- not only of my son, but other kiddos who face similar- or completely different- difficulties.

Left to Right: Christian, Easton, Charlie

Join us on our Journey

Welcome to the Adventures of Charlie and his Service Dog! Join us as we dive into this journey, a journey that has already been in the works for some time now. 

My husband and I have 3 boys; Easton, Christian and Charlie.  Christian and Charlie are twins. Charlie was diagnosed with Autism at the age of 4. Every day is a struggle.  Part of Charlie’s Autism includes a sensory integration disorder- he is bothered easily by loud noises, easily overwhelmed by big groups of people, and is easily distressed by the way clothing, soaps, lotions, etc feel on his skin.  He has struggled with sleep since he was born. Charlie has a really hard time with change as well as transitions from task to task and requires as much routine as possible.  Anything that is slightly out of line with any of these areas and it will send him into severe meltdowns. We call them meltdowns because tantrums seem pretty wimpy in comparison to these.  

We have witnessed how beneficial a dog is for Charlie to stay regulated and have been in the process to get him a service dog that can help him in the community as well as at home, and we're getting closer to having that dream come true! We wanted to bring others along on our journey to help educate others not only on Autism, but the process we've been navigating to get our son a service dog.  So stay tuned, share our page and enjoy the adventures because there is a TON more to come!!