One year ago Brett and I sat in a small room at the Thompson Center and got Brody’s Autism Diagnosis. A year later here we are with lots growth, lots of therapy and the realization that my baby will be starting Kindergarten this Fall. When they tell you it goes fast, it’s not cliche, it really does go fast.
In the past year, Brody has grown by leaps and bounds. Brody is doing wonderful and thriving extremely well. He still has some things we’re working on, but who doesn’t? Brody will be undergoing a sedated EEG, MRI and blood testing for genomes that could help us better understand his genetic makeup and how it’s affected with his Autism diagnosis. The reason for the MRI is because of staring spells Brody has been experiencing for sometime now. He have periods where he stares off into space and has a hard time snapping out of it. The thing they would like to rule out are “silent seizures”. Children with autism have a 25% chance to experience seizures or seizure like activity. We are holding onto faith that he is not experiencing that and hoping and praying for good news as we go in for that the end of May.
Like I said it’s been a year and I always find it fitting that April is the month that lots of wild and crazy things happen in our life. April was the month Chase and Peyton got extremely sick 2 years ago, Brody got his Autism Diagnosis 1 year ago and it’s also the month for Autism Awareness in the world. April is….hard but special. It’s when Spring surfaces and baseball starts up again and when the weather just puts you in a generally good mood by walking outside. I love the changes of the seasons and always looking forward to what new season is headed our way. But April this year has been no different than the past two years. April has been…challenging, hard and slightly depressing once again.
A couple months ago before Chase and Peyton were 2, I made all the observations that I didn’t want to be making, particularly Peanut. To know Peyton and be in Peyton’s world is a true gift. I say “his world” because that’s exactly what it is and if he lets you in, you should feel honored. Now, to know Peyton you also know that this kid has been on a roller coaster of events from birth. Poor kid has been hospitalized 6 times in his two years. If you’ve ever watched Peyton enter a doctors office, it’s extremely sad. He just throws a fit and is scared to death. He knows exactly where he is and the trauma it brings him is heartbreaking. Peyton keeps to himself and is only interested in anything on his own terms. His comfort is his Ipad and a tiny toy thermometer that he taps religiously. When he walks into a new room, you will most likely find him knocking on the hardest surface his eyes can find and then he’ll put his cute little ear up to it as he knocks. Peyton stays in his bubble and lets few people in but once you’re in, you’re good. And if you get lucky enough to witness his preciously adorable smile, it’s a win in itself. He doesn’t talk, just hums on occasion and paces the floor constantly. He’s special and always has been. But all of those things are what led me to this blog post.
As it all signals signs of Autism.
Once again, here we are a year later sending off the all to familiar packet of paperwork that brings all those observations to a reality.
I just can’t believe that it’s all happening again.
I told you about Peyton but here’s what’s going on with Chase Michael. Chase is a happy little guy with a temper the size of Texas. Not really but he’s definitely a strong willed little boy. He is communicating, repeating sounds and makes wonderful eye contact along with a phenomenal set of play skills. He will play with a toy and keep his attention on that longer than any of my boys have ever done. He also talks more than Brody did. So, excited doesn’t even begin to describe how I felt when I heard him saying words and doing all the things age appropriate. But because Peyton is showing such strong red flags, Chase will have to be evaluated too. Because they are identical and share genetics, if Peyton gets diagnosed, there will be an 88% chance that Chase will have some form of Autism. 🙁
Punch in the gut all over again.
I am holding out for Chase. To me and Brett we still have 12% chance for him and to us that’s more hope than we originally thought.
I’ll tell you, I haven’t handled this very well. I’ve questioned everything, including myself. Wondering what I did wrong from pregnancy to infancy. And although Brody’s doctors have told us religiously that there is nothing we could have done to prevent this, I can’t help but wonder. I’ve also gone through the pity party and kinda still have my moments. The “why me?”. I’ve also mourned all over again about the life I had dreamed of in my head. Watching my kids play sports, watching them go to prom, getting their license. I mean I have gone to extremes because when your child potentially gets another label attached to them, you just wonder what their future will look like as the one previously envisioned has been crushed in your mind. It’s all out of my control and I think that’s the hardest part for me. The only thing I can do is get them into as many therapies as possible and even then, will it be enough? Will they be ok?
Every parent eventually wants their child to grow up, fulfill their dreams in whichever avenue that may be. Move out, be successful and happy. Will I get to experience that and watch it unfold? Right now, I just don’t know but I’m holding onto hope even though right now I struggle keeping it intact. Only time can tell which means we have a lot of work to do in the meantime. Lots of new obstacles to cross to achieve goals.
Brett has been the rock through all of this. I’m honestly envious and wish I could handle this set of news the way he has. But I haven’t. I’m just being real here. I have been depressed, emotional and just in a major funk since we made the decision to go forward with the evaluations for the twins. I have been a bear to be around and an emotional wreck. I’m honestly just a complete and utter mess right now as I’m truly just all over the place. One minute I’m happy and optimistic, ready to get a plan set up. Then there are times I’m so overwhelmed that I feel like I can’t breathe. I hate that feeling but I’m trying not to fight it so hard like I normally do. I’m trying to just allow myself to feel everything. I hope it helps me so that eventually I’m stronger for the boys.
Family members have told me that things could be worse. Yes, that’s beyond true and I know when they say that it comes from a good place. They want to make me feel better. But honestly that’s not what I want to hear because right now it just….
“Saying someone can’t be sad because someone else can have it worse is just like saying someone can’t be happy because someone else might have it better.” This quote spoke to me on so many levels and kinda told me that it’s ok to feel sad and be upset. This is life. This is real stuff.
The future for Brody is looking great and I know he is going to be successful in whatever he chooses. He truly is so smart and I often joke that he is smarter than me. He really is.
But now all the fears of future for the twins are uncertain all over again. Especially Peyton because his symptoms are totally different and slightly more severe than Brody’s were.
The saying of how “if you meet one person with Autism. Then you have met ONE person.” We are living and breathing that quote right now and understanding it on a level I had never imagined.
I don’t really feel inspired at the moment, to be honest. Usually I can always find the silver lining in a situation and I know that eventually I will see it. I know it’s there. I know I’ll get my groove back. I know this because my kids are my heart and soul that pushes me every single day.
I know we will get through this.
Some days I don’t know how or why, but I know we will.