To Miles' Teachers...

Today was the start of another school year for my younger son Miles. For the last 2 years, as my older son Chase has begun his school year, I have written his teachers, therapists, and aids letters -  roadmaps if you will - discussing all his "special needs" associated with his Autism. This year, today specifically, I feel the need to write a letter to Miles's teacher - a road map to his personality and struggles.

Chase's letters/notes are easy to write. Obvious. He is non-verbal, so there are lots of things to explain regarding his iPad, behaviors, non-verbal cues, wants, needs, strengths, weaknesses, etc. With Miles it's not so black and white. So to Miles's teacher...

Today was the start to another year. You may have noticed the apprehension and nervousness in Miles's demeanor when you came for your home visit yesterday, to welcome him to his new class; and even this morning when entering your classroom. While he seems so social and outgoing on the outside, Miles internalizes and worries about so many things. 

He spent the summer going to super hero and soccer camps, never missing a beat, and always asking/begging to know when it would be time to go back to school. He LOVES school! And he loves to learn, to socialize, and to have something that's his own. 

You will quickly see that he has a huge heart. He is a natural leader. And he is very empathetic, always looking out for others and willing to include everyone. But today, I noticed another side of Miles...fear/nervousness/apprehension about going to school. 

He's always been my go-getter, strong-willed and stubborn, yet sensitive and loving. As he's gotten older and began to understand more, I am noticing him picking up on EVERYTHING and taking on roles no 4 year old should have to take on. I cringe at the thought of all the doctors visits he's been dragged to - from neurologists to homeopaths - and the therapies has to wait patiently outside of for hours at a time, but that goes with the territory of having a special needs sibling. 

While it hurts my heart to write this, Miles looks to school to fill a void of friendship, attention, and play that he is not getting at home. As much as I would LOVE to see my 2 sons running, playing and laughing together, that's not the reality of life at home. As hard as it seems day to day, I know these experiences are shaping Miles to be a special soul himself. He intrinsically knows why Chase won't play with him, why he can't talk, and why their relationship is "different." But I know it still hurts him deep down. 

Miles is Chase's biggest fan. From the time he was born he has looked up to Chase and wanted nothing more than to have his attention. Because of the Autism, Miles doesn't get it very often. But he NEVER gives up trying. He is protective of Chase, always looking out for him, making sure he's OK, and "showing him off" to all his friends. The pride he exudes when Chase does something new or great warms and breaks my heart at the same time.

Miles knows pain, he knows stress, he knows worry, he knows heartache, and victory, but most importantly he knows unconditional love. So while it's not "ideal" for him to live with certain stresses at home, I know without a doubt it will make him a better person in the end. 

I do my best to nurture his spirit, encourage and build his confidence, reassure him and praise him for the wonderful person that he is, but at the end of the day I am just doing the best I can with 2 children who have extremely different wants and needs. I pray constantly for guidance and patience. I know God has special plans for his special little soul.

I don't have specific instructions or advice to go with Miles, I write this simply so you will know where he comes from, why he is the way he is, and help him to grow in confidence this school year. 

Thank you for investing in our children. Nurturing their curious minds and spirits. And helping to shape them to be better kids with each day!

What's Meant to Be, Will Be

I wrote this post a few days ago about how shitty Autism can be. I was having one of "those" days and just wanted to be real.

But then I had the honor of hearing author Liz Murray speak at a luncheon for work (Cumberland Heights) and was blown away at her amazing story. If you have not heard of her, Google her! She is the author of the bestselling memoir "Breaking Night" and has a LifeTime movie about her life called "Homeless to Harvard." Her story is truly inspirational.

As she spoke to these 350+ guests at this luncheon, about her story, I couldn't help but think about my previous blog post and how I just needed to go home and delete it; because she spoke about gratitude and hope. 

Despite being born in to a family of drug-addicted parents, becoming homeless at a young age and then losing her mother; she fought. She graduated high school in 2 years, went on to win a New York Times scholarship to go to Harvard and lived through all her obstacles to be where she is today; sharing hope.

It really put things in perspective. And I was once again reminded that things could ALWAYS be worse. It happens all the time. Just when I sit down to have a good "ugly cry" and feel sorry for myself, God slaps me on the wrist and reminds me how truly blessed I am. There are people, children, out there suffering from far worse things than Autism. And yeah, it sucks a lot of days, but when you look at our overall health and the things we have, we have NO reason to complain.

There are always going to be worries about the future, "what if's" as Liz kept referring to them. But those "what if's" are what keep me going too!

Part of my job is to interview employees for "Employee Spotlights." One of the questions I recently started asking people was, "What is your motto in life?" As I asked them I started thinking about my own motto, and it was very clear..."What is meant to be, will be."

This journey with Chase has taught me so much, but above all, it has taught me to trust God's guidance, listen to my gut (which is really just God telling me to "listen up") and believe that things will work out how they are meant to work out if I just follow His lead.

So my point in writing all of this is, take a moment to really think about all the things you are blessed with. Even on your bad days, things could always be worse. We don't ultimately have control over our circumstances or the journeys we are lead on, but we do have control over how we react to those paths and the attitudes we choose to have while traveling them.

Shitty Ole Autism

I usually don't write about the shitty parts of Autism. And I'll preface this post by saying that I am not writing this now to get sympathy or a pat on the back. I am simply writing this to be real. Autism is not all "Rain Man" and brilliant minds trapped inside quirky little kids with odd behaviors. There are a lot of shitty days. Literally!

Let's start with that while I'm on the subject. Potty training is a feat of it's own, even with neurotypical (NT) kids, but for kids with Autism it's a challenge on a whole other level. I wrote about our potty training experience with Chase here, here, here, here and here. YEAH, that's a lot of potty posts. And that's not even a fraction of what it really entails. That was just to get him to pee on the potty. Not even poop. That was January 2014. Since then, Chase is (was) very independently using the bathroom to pee and not having accidents. He is still not dry all night so he sleeps in a pull-up. But he stays dry all day at school, goes independently while he's there and does great. BUT, since our move, it has become an issue again. So many factors and variables playing a part lately it's hard to tell what is causing the regression of peeing his pants, but it only happens at home, in the afternoons, and usually only when he's outside playing. But some days it happens 4-6 times!

Is it a behavioral/attention-seeking thing?
Is it an allergy?
Is it the homeopathy we are doing?
Did he eat something he wasn't supposed to?
Is it because we did not have filtered water for the first 5-6 weeks after we moved in?
Is it because he was in a new environment and out of his "routine"?
Is it because of the chemicals and smell of fresh new paint?
Or is it because there was mold discovered growing inside our air conditioning unit that had been blowing back in to the house circulating mold spores for us to breathe?

Who the hell knows?!? But these are the thoughts and questions going through my mind. I know I sound like a crazy person, but any other "bio-med autism mom" knows exactly what I'm talking about!

Pooping is a whole other beast! For Chase it's sensory related, or a control thing. Without going in to a lot of nasty details, he just preferred/prefers to go in a pull-up standing up. It's not that he is incontinent. He knows when he has to go. He used to go get a pull-up, bring it to me to put on, then come get me to change him.  We worked on pooping in the potty off and on since he was originally potty trained January of 2014. It was not until a few weeks before we moved, January of 2016 that he FINALLY got it! 2 years later, he started pooping on the potty! OH HAPPY DAY! That lasted about 3 weeks until we moved in the new house. Now he has pooped his pants just about every day since we have moved. He doesn't even bother to get a pull-up anymore. And sometimes multiple times a day. So nasty! So fun!

Let's talk about annoying behaviors. Those go in cycles. Some of the most recent ones have been:
1) Hiding things all over the house. This includes toys, chapstick, glasses, wedding rings, shoes, etc.
2) Jumping off EVERYTHING. Chase would climb up on anything he could get to (couches, chairs, window sills, dressers, shelves, deck railings) and jump off to the ground. That was really fun to wake up to at 5:30 in the morning. (THUD!) Made my heart stop beating just about every time...waking up from a dead sleep to that sound. Thank God that phase is gone, for the most part.
3) Dropping things. This was a visual "stim". He would pick up toys, silverware, grass, rocks, anything really, hold it up to his eye and drop it. We had several things broken during this phase.
4) Eating dirt. Sitting in the back yard, eating mulch, weeds, rocks...I don't even begin to know why?

But I always go back to those questions above. Everything is related to those factors...always. If one of those things is off, everything it off! It's a constant guessing game and balancing act.

Sleep. Or lack there of. This one has not been an issue for a while, until we moved. Chase used to wake in the middle of the night all the time. Going to bed was also a huge battle. It would take him forever to settle down and fall asleep. Diet change helped with this tremendously though and until we moved sleep was great! Since we moved though, Chase has woken at least 2 nights a week (a lot more recently) between midnight and 4am. He will jump out of bed, bust in to our room giggling and get into our bed. Sometimes he is awake for 30 minutes and will fall back asleep. Sometimes he will toss and turn and "talk" for 2 hours then pass out. Sometimes he will wake at 3/4am and never go back to sleep. Those days are long! I feel like a walking zombie most days lately.

Some other awesome things we have gotten past now, but dealt with for a long time are:
1) Epic tantrums and meltdowns both in public and at home. Diet change has played a large part in getting rid of these meltdowns, but it used to be really bad. There were mornings where Chase would wake up and just the sound of Miles talking would send him in to a raging fit, throwing himself on the floor and screaming for 30+ minutes. Those days are rare now.
2) Poop smearing. You hear this a lot with kids on the spectrum. We were lucky that it didn't last long with Chase and wasn't terrible, but he would do it all over his bed. Ok, enough about that.
3) Teeth grinding. This was not pleasant to listen to while trying to drive, or any time for that matter. Diet changes also have helped this pass.
4) Vocal stimming. I can't even begin to describe what this noise sounded like, but Chase would make this horrific noise while watching his iPad or visually stimming on something and it sounded like a dying cat and was so loud! He used to do it for hours! I wanted to pull my ear drums out of my ears.
5) Eloping or running off. Chase hasn't been too bad about this, but there were definitely times he would scare the crap out of me and run for the hills faster than I could catch him. I have friends who found their kids several streets away after they snuck out of the house, or hiding quietly in the house. And when they are non-verbal and won't answer to you call, you lose your lunch trying to find them!

I'm sure there are more. I don't want this to be a depressing post. I know everyone has their own daily drama. Kids are hard regardless of a diagnosis or not. I get the best of both worlds. Typical "three-nager" drama and autism-friendly drama! ;) Wouldn't have it any other way! Just trying to keep it real here!