Today I was hit right square in the “feels”. My phone greeted me this morning with my Facebook Memories, which are a recap of things you’ve shared on Facebook in years passed.

One year ago, I shared a picture and an update about Augustus, who had just turned 18 months old.

The caption to this picture read:

This guy is 18-months-old today! 😲 Can you believe it!? I can’t. 😒 He is a boy of few words, which I think is largely in part to the fact that his older sister never stops talking. πŸ˜„ He is always on the move.πŸƒβ€β™‚οΈ Even when he watches tv, he walks around. He loves to crawl up onto things and climb. πŸ˜“ He has grown 3 INCHES in the last 6 months, and is very close to being off the charts for his height. His height to weight ratio is perfect. So, in other words, he’s a big ol’ healthy boy! πŸ’ͺ He’s still a big eater and isn’t too picky. πŸ— He adores books and asks to be read to often. πŸ“— He also likes to sit by himself and look at books. He’s really into throwing and rolling balls around.⚾️ He loves anything with wheels. 🏍 He has a little camoflauge blankie with a stuffed animal deer head on it that is his absolute goto for comfort. ☺ He has to have it to sleep. 😴 He’s big on sleep. He gets a little fussy and wants to go to bed or take a nap and is all for it. πŸ‘ He still likes to wrestle and often uses his head as a weapon. 😏 His sister likes to boss him around and even push him around. 😣 He’s such a lover, though. He usually doesn’t fight back. He loves to give hugs and kisses, and loves to rest his head against mine for some snuggles. He is the sweetest. πŸ˜πŸ’™

Sweet, huh?

Then, in the comments, I elaborated on some details my friends had inquired about:

At this time we were starting to come to terms that maybe something was going on with Gus, but just weren’t sure, and not yet willing to admit it.

I could take the caption to that adorable picture and pick it apart, piece by piece, and show you that what I was describing, although very vaguely and unaware, were some of the symptoms of autism spectrum disorder and sensory processing disorder.

Autism taketh away…

Notice in the comments I mentioned the words he was using? Although they were few, he was using words; for a while. They eventually went away.

That’s what really hit me. It hit me that I’m not even sure I remember what that sweet little voice sounded like, because I never thought it would go away. We all take so many things for granted, such as the voices of our loved ones. I was fortunate enough to hear him say “mama”, which is more than some can say, and I am blessed in that.

That’s what autism has taken away. It took away my son’s voice; his ability to communicate verbally. What I wouldn’t give to hear him say “I love you.” I’d even love to hear him argue with his sister.

While he still makes noises and sounds, he does not speak. Maybe he will again one day, but maybe he wont.

Autism took away the future I saw for my son and my family.

Autism took the wind out of my sails (initially).

Autism rules my schedule and routines.

Autism filled me with doubt and changed the way I see almost everything.

Autism requires my son, my baby, to work so much harder than most to be socially accepted and understood and to learn. He learns differently.

He is different not less!

Autism giveth…

Autism has given me absolute proof that love requires no words. None. That in itself is probably worth more than everything it has taken away.

Autism has given me a new outlook on life and a new way to view things.

Autism has broadened my horizons and introduced me to things and people I would have likely never come across otherwise.

I’ve got some hella wind in my sails now! It took it away, but sent it back with a vengeance.

Autism has given me understanding.

Autism has given me an understanding that words are not needed to communicate.

Autism has given me strength; so much strength.

Autism has renewed my faith and renewed my trust in God.

Autism has given me an entirely unique, loving, affectionate, smiley, and happy son to fulfill my life; my family’s lives.

God has entrusted me with what is perfect and planned for me.

I always wanted to be a mother. That’s all I ever knew. When it became obvious that may never happen I turned to fertility treatments and had my beautiful daughter. Then God, in his own timing, blessed our family with this amazing and unique little boy who would bring us all together and build us all up in strength, understanding, and love, and show me a side of motherhood many don’t see.

Both of my children are perfect for me and to me.

Autism: It Giveth and It Taketh Away

– AMomsFaithUnbroken

Autism: It Giveth and It Taketh Away

Welcome to PECS (video)

For now, we will show Augustus the picture related to the activity we will be doing to help him learn which pictures are associated with which activity. We will also give him choices at snacktime, with activities, for TV shows, etc., letting him choose between a few pictures in the given category. We also plan to implement “first and then” showing him what we will be doing and what will come after to help him with transitioning from one activity to another. When Augustus gets a little better with his motor skills and gets this whole PECS thing figured out, we hope he will eventually be able to hand us pictures to let us know his wants and needs. Then, for on the go, maybe we will be able to incorporate the use of PECS on an electronic device such as a tablet. He has done pretty well showing me what he wants for a snack when he gets hungry and frustrated and I show him his snack pictures. Hopefully, his frustration in general will decrease overall once he knows he can get what he wants and communicate with us via pictures. It’s all a work in progress.

-AMomsFaithUnbroken

(He also has some pictures in his bedroom that aren’t in the video. We will add more pictures and options as necessary.)

I figured it was about time I give an update since diagnoses.

We just redid our IFSP (individualized family service plan) with Birth to 3 and changed some of our goals and frequency of therapies.

Gus is seen for OT (occupational therapy) 2x weekly, PT (physical therapy) 1x weekly, and Speech (speech therapy) 3x weekly now. He will also be seen at daycare 1x weekly for a while to see how that’s going, and will be seen at times at home, too. It feels really good to be getting him the help he needs to thrive.

We are traveling to LifeScape in Rapid City, SD, once weekly for 3 of the above mentioned therapy sessions. The others he does at the local school.

This should be our set schedule for a while now, but will all completely change come June when he turns 3 and is done with Birth to 3 Services. We have a plan for that time, but are still working out the details, and have a lot to get figured out before then. All I know is that there will be some very big changes for us for a while starting this summer.

I still spend some time every single day on the phone with the State, doctors, therapists, etc.

Yes, I still have to fill out paperwork all the time.

So, how are things going you ask? Really, pretty well. We are actually seeing some improvement with the therapy he has done so far. He is paying attention for longer periods of time, walking for longer periods of time without “refusing to have posture” (as we call it), and has quit biting mom, dad, auntie, and grandma! Therefore, he has already met one goal on his IFSP – He has quit biting!

We are always constantly working to understand his sensory needs and have purchased a few things for him to use at home, to include a trampoline.

We do our best to apply what we learn in therapy to his everyday life.

Now, onto the PECS thing in this blog’s title. What is PECS? The Picture Exchange Communication System. (Click the highlighted text for more information.) In a nutshell, it is a way for nonverbal people to communicate using pictures. Right now, we are working on showing him that if he points at or gives us a picture of what he wants we can help him get it or get it for him; It being whatever is on the picture. It’s a process that takes a lot of time, but he has shown some progress with it.

We know he knows things, but just struggles to communicate. For instance, he can look at a book of animals with an animal on each page and push the corresponding button with a picture of the animal on it. He has matched things for us before, as well.

He is going to be doing some specialized occupational therapy for eating and feeding at LifeScape. Not just fine motor skills for utensil use, but also finding out what it is about certain things he doesn’t like and why he has certain behaviors when he is eating. Since he has SPD (sensory processing disorder), it could be any combination of things to include textures, temperature, consistency, etc. It would be nice to get some things figured out so I don’t feel like I need a pressure washer to clean up my kitchen after evey meal.

We are also using some sign language as well for words such as “more”, “wait”, “stand”, “swing”, “bath”, “yes”, “no”, “all done”, “milk”, “drink”, “food”, etc. He has never himself signed, but I’m doing my best to always use the signs when communicating with him and practice hand over hand singing with him. I try to get his older sister in on it, too.

He is also saying something like “dooooh” (I perceive this as “no”) and pushing things away that he doesn’t want.

The older he gets, the more frustrated he gets, which is totally understandable. My heart breaks for him that he has to work so hard to do every day things we all take for granted. He will live a life of struggle, but with many accomplishments and things to celebrate, and I’ll be right there with him to struggle with him, help, and celebrate.

We have also found out that Gus’ lazy eye that was turning in pretty significantly has seemingly self-resolved. So, right now, surgical correction is completely off the table. Woo hoo! Also, unlike the rest of his family, his vision is great without any glasses or any kind of correction. I tell you, he dares to be different in every way. Yay, Gus!

I feel like I have finally come to a place of acceptance and am believing more every day that this is all meant to be and that I am exactly where I need to be. Life is feeling less scary, for now, anyway.

Until Next Time,

-AMomsFaithUnbroken

Show Me Your PECS!