Never Ever Give Up

Dear Autism Moms and Dads,
We're not so different, you and I.  I imagine our days are filled with similar struggles, similar frustrations, similar fears.  Sure, our kiddos might have different diagnosis or fall in different areas on the autism spectrum, but at the end of the day we can relate to one another more so than a lot of other parents can.  With that being said, from one autism parent to another, I hope you can take this message to heart; never ever give up.

You see, my husband and I have been on this autism journey for 4 years.  Well, 4 years diagnosed, 8 years total.  And we've learned a thing or two along the way.  In the early years it's hard to see past the exhaustion.  Our son Charlie was so needy as an infant.  He was always fussy and wasn't content unless he was constantly held and moving.  It was even harder because we could see the glaring difference between him and his twin brother.  They were polar opposites, and actually still are to this day.  And he rarely slept.  Good golly, the sleep deprivation was enough to drive someone batty.  He actually didn't sleep through the night until he was 4 years old and even then it was hit or miss.  Even today sleep is still tough, but slowly getting better.

We know all about the delays to hit milestones, the early intervention appointments, even PT/OT at a young age.  All of this before we even knew what we were dealing with.  We've been told so many things by different professionals; that he possibly had Cerebral Palsy (early on-which was false), that he couldn't possibly have autism because he made eye contact and because he was social, or (my favorite) that my husband and I just needed to learn how to interact with Charlie and things would be fine (insert eye roll here).

Boy, do we know about meltdowns, and trouble going out in public, and traveling, or something as simple as walking safely in a parking lot, or even just riding safely in a vehicle.  We've experienced all of it.  We've experienced how brutally hard and stressful it all can be.  We've experienced the ups and the downs- the autism rollercoaster as some people call it.  But despite the excruciatingly hard days, we push on.  We keep going to the therapy appointments and practicing skills.  We keep trying outings in public, or eating at restaurants.  We keep trying different tactics to make riding in a vehicle easier, we always practice different skills to make meltdowns less intense and not last as long.  And we keep practicing coping skills, constantly.  And guess what??  It's paying off.

Mamas and dads, don't give up.  Even though some days may be 2 steps forward and 3 steps back, don't give up.  Never ever give up, because all of the hard work, the long days, the long nights, the countless hours of therapy, is paying off and it's so, so worth it.  We are seeing more and more wins, some that have completely blown us away.  We have been able to do things as a family that we never thought would be possible.  We have big goals for our family this year.  Some of them may work out, some of them might not, but we're going to try anyway.

Our kids are amazing, brilliant and so incredibly resilient.  They are capable of so much more than we know.  So, on those hard days, wipe those tears, keep pushing on and never ever give up.  There is so much good in store for the future.

Discoveries of a 2nd Grade Classroom

Goodness gracious it's been a week.  One of those weeks where you have a million things going on each day, about 10,000 things on your to-do list and no end in sight.  This weekend doesn't look like it will slow down either.  About a million more things going on, things that we don't feel we can say no to.  We've spent a lot of time in the community this week, a lot of transitions, a lot of time in the vehicle....all of which are things Charlie has a really hard time with.  

Sunny helps Charlie anytime we ride in the vehicle (Charlie doesn't have a seatbelt on because we are parked and ready to get out).

We practice a lot of skills with Charlie each week.  This week we've practiced patience quite a bit and finding things to stay busy with (that doesn't involve screen time) while he's being patient.  A lot of this patience is practiced while his older brother, Easton, is playing hockey.  Even a year ago we didn't think we'd see a day so soon where Charlie could tolerate being at an event for a long period of time.  But he's totally been rocking it the last few months.  This has included a 2 day hockey tournament last weekend.  A few things that helped: Sunny (of course), having a familiar friend to play with, and this mama prepared with a stuffed backpack full of snacks and boredom busters!

Getting ready for a weekend full of hockey!  Sunny has acclimated well to being a rink dog.

Sunny helps Charlie stay occupied during a hockey game.

Sunny was able to join Charlie in his classroom today for a Valentines party.  Tyler and I enjoyed watching Charlie with his classmates in his room today.  All of his classmates know Sunny and loved being able to see her.  And all of them were super respectful of not petting or distracting her.  It was like she was a permanent fixture in the room that they are all used to having there all the time.  The party was fun, cute and entertaining.  And these kids are all amazing.  I watched as they helped each other, they were respectful of each other and so incredibly sweet.  They were excited to give each other their valentines that they worked so hard on and had fun at different stations around the room with crafts and snacks.  One of the stations was a photo booth where the kids had their picture taken with a polaroid camera and then made a picture frame for it.  It was the cutest thing and Charlie wanted Sunny in his picture with him.  Here is the result....

Cutest thing ever!

But what melted this mama's heart the most was a comment from another little boy in the room.  As the party was wrapping up and the kids were gathering their things to go home, this boy, we'll call him E, was standing next to Charlie and both were packing their backpacks.  E dropped a couple of items that landed next to Charlie.  Charlie kindly picked them up and handed them back to him.  I praised Charlie on being so thoughtful and helpful (a social interaction like this doesn't come easy for him- this too has taken lots of practice) and E looked at me and said "I really like Charlie.  We are pretty much best friends."  My heart about exploded.  You see, Charlie doesn't come home and tell us about kids in his class that he talks to or plays with.  I know he gets along with his classmates because his teacher has told us he does.  But we don't get specifics from Charlie.  Charlie doesn't come home and ask for playdates with anyone from his class, or anyone for that matter.  But it occurred to me today that the world might be an okay place if we have more kids like I saw in this classroom today.  All of them showed kindness, patience, and respect.  So, to the parents of the kids in Mrs. Andrew's 2nd grade classroom....nice job.  Your kids are amazing and you should all be so proud of them.  Thank you for teaching your children kindness. I'm glad Charlie has them by his side and I pray they all continue to grow together as the years go by.  

Charlie & Sunny patiently waiting to leave school

We Got Your Back, Kid

It's funny how different autism symptoms seem to ebb and flow.  And some stick around all the time. For example, sensory issues are always present with Charlie.  Sometimes the sensory difficulties are more glaringly obvious than other times, but it's always there.  Or having a tough time transitioning from one thing to another is a constant.  Troubles riding in a vehicle safely is getting better, but some days is tougher than others.

Being rigid (not being flexible in thinking or in plans) comes and goes.  Some days he can totally go with the flow, other days (or weeks) he has a hard time getting past certain things.  Right now we are on a hard upswing with rigidness.  The other day Easton and Christian found sticks outside that they made into magic wands.  They were practicing magic spells and having a grand time.  But Charlie was super upset because; 1- they had sticks in the house- therefore they were breaking the rules, and 2- they are sticks, not magic wands.  There was no wiggle room.  It was a totally black and white situation with no in-between.  Even after telling him that mom and dad told the boys they could have the sticks/wands in the house he wasn't convinced it was ok. This went on for several minutes before we could get him interested in something else.

Rigidness rears it's ugly head often.  It can show up when we take a left to go to church when we usually take a right at that corner.  It can show up when he's playing with his cars and they MUST be in a certain order when he lines them up.  Rigidness shows up when he wants to wear the same type of shirt every. single. day. (it gets interesting when mom hasn't had time to keep up on laundry).

Some days are really good and others not so much- just like anyone else in this world.  Knowing this means we'll keep working on it with him.  We'll keep working on problem solving when those tough moments pop up.  We'll keep helping him remember to use his coping skills in the hard moments.  And we'll be flexible if plans don't go according to how we thought they would.  It's not a big deal to us that our "normal" looks very different to everyone else's when we are out in the community.  

And as tough as these things are for us as parents to handle, think about how frustrating these things are for Charlie to live with.  No amount of frustration will ever be enough for me give up on my baby.  We'll keep trying because we love him and he deserves our best efforts.  We'll keep going places, because he needs to learn how to live in this world.  We'll keep doing new experiences because what is life without seeing the world around you.  Even if it is hard or frustrating (for all of us), we're not giving up.  Tyler and I are not about to back down.  Not now, not ever.  We got your back, kid.