One year ago today, my son Peyton was discharged from the hospital after a month long battle with a virus. I’m not sure that many know how bad it was during those 4 weeks in the hospital and it’s not something most people like to talk about a lot. As bad as it was, we have managed to go through this first year with lots of bumps along the way. 2015 definitely takes the cake on the hardest year of our entire life.
I know that we have been pretty much an open book about Chase and Peyton as we went through the first year of life with them. We chose to be open about their journey to keep everyone updated as we went through the “isolation period”. Staying open to everyone on what was going on was therapeutic to me, personally, as a way of expressing my feelings in words. There were many, many rough days and days where I was ready to throw in the towel. But by writing and hearing feedback from others who were following the twins journey was truly an outlet for me. It helped me cope with what was going on and the positive comments and prayers assured me that I could get through this. Our family could get through this. This by no means is my story, it’s theirs. But if I’ve learned one thing over this journey, it’s that I have to stay well and feel good to be able to take care of my boys.
Well here we are a year later. Peyton has been cleared to make the switch to whole milk and although his eating is still a struggle, he’s improving slowly every single day.
Something that we haven’t been as open about is our sweet Brody bear who has been dealing with his own unique set of challenges. Brody developed normal and was developmentally ahead in all his milestones. Then, at 18 months when he still wasn’t talking or acting interested in repeating sounds, a red flag went off in the back of my head. Of course I ran to the Internet to put my mind at ease. And of course it didn’t. I chose to give him time. He was only 18 months and every child develops differently.
Shortly after, we started noticing odd behaviors in Brody. It was like nothing we said “clicked”. We tried disciplinary measures, time out and consistency. But I never felt good about disciplining him when it was more than evident he had no idea what was coming out of my mouth. I was truly at the end of the road. I couldn’t wrap my head around it. Why couldn’t he understand me? Why is everything so hard for him? Why are these other kids talking in sentences and he can’t even say one word? It was devastating watching him struggle so much.
Then around age 2 came the tantrums, fits, tears and hard days. I started questioning everything and at this point knew it was time to have him looked at and to voice our concerns. First step was a speech assessment and figuring out what exactly was going on with him. We were told “apraxia of speech”. With deep intervention, he would be fine by kindergarten. Ok, a plan was set in place. Our questions were answered…………..But were they?
The months following it was evident that there was something bigger going on. The tantrums magnified, the fits were constant and the struggle Brody was dealing with everyday was exhausting for him. We enrolled him in a Preschool that catered to his needs and felt good going forward. That was until we had a meeting with his teachers and therapists and learned that Brody was struggling with a lot of the same issues at school that he was at home. He was truly struggling and it was totally beyond his control. At the meeting, it was very evident that I needed to speak up and ask the question I so desperately didn’t want to ask, “do you feel that Brody is showing signs of Autism?” There I said it. It came out. I finally asked. Time has passed. He’s 3.5. We have to know. I have to know.
The room went quiet. That was all I needed to know. I’m observant. I can read people and 90% of the time have a good idea what they’re thinking. I’m not good at a lot of things but observing people and their body language is something I can honestly say I’m pretty darn good at.
Leaving there feeling a little defeated. A little sad. Finally realizing the fears I had put in the back of my head were accurate. And then the feelings of maybe it’s not true. Maybe he just truly has a speech delay. It’s easy to do that. Go back a forth. Back and forth. But regardless of how I felt or anyone else, we needed to find out. We got all the paperwork in and waited for the phone call.
Fast forward to this past week……
Monday April 25, Brody underwent a 4 hour evaluation. We were there with him the entire time and felt so good about the evaluation. The doctor walked in and gave us the news that Brody indeed was being diagnosed with Autism Spectrum Disorder. We had come to terms with it and were prepared for whatever news we got. But the second it’s said…out loud…about YOUR child. It’s devastating. Not at all that he has Autism. But the lifelong struggles he will go through. All of the hard work that it will take him to get there.
Like I said earlier, this last year has been hard. I know it can ALWAYS be worse. But I’d be lying through my teeth if I didn’t admit how hard it truly has been. It has taken a toll on everyone around. Not just myself or Brett and not just our children. But everyone. We have three children who are all young. 2 require a lot of one on one help. And some days are just HARD. Plain and simple.
After going through the the whirlwind of emotions and realizing that nothing has changed. He’s in all the therapy with the exception of one, which he will start soon. Our way of life has already shifted and we’ve adapted to it. Now we just know. We know that Brody does indeed have Autism and nothing about the diagnosis changes anything we are doing right now. It just educates us more for the future.
But I will tell you this. Brody is talking…in sentences. He’s thriving academically. Brody’s level of intelligence is above average, he’s affectionate and loves to be around people. He struggles with transitions or differentiating from routine. He still struggles with understanding certain things. But he’s doing amazing. Autism is a spectrum disorder, the levels of severity can range from person to person.
We are sharing this information with everyone and choosing to be open with it. We feel that we can’t educate or expect you to understand him if you don’t know what he’s dealing with. So please don’t look at him differently, don’t stereotype this with what you think it is. Do some research and be open minded. Autism is a part of him. But it does not define him
He’s a pretty awesome kid and we are SO proud of him! Brett and I have no doubt that we will leave a mark on this world.
Dear Nikki and family, Thank you so much for being open and honest about what you’re going through; it’s so poignant it brings tears to my eyes. Brody is one of the cutest little boys l’ve ever seen!!
Those of us who have been praying for you all will continue, I’m pretty sure. I know l will. I’m glad your family has moved to Moberly, and it appears you’ve found a very good church. God’s greatest blessings to you and your family, Jennifer Fleming