"Jace has autism" are the words we received a few weeks ago. We already knew it was coming but hearing those words just also makes you tear up a bit. I looked at my son and his smile and knew we will be okay.IdecidedIwanted to share Jace's story to support other parents out there. You are never alone.
Rewind a bit, so I can tell you Jace's story. Jace as a baby excelled in his gross motor skills, however, we did notice some of his cognitive skills were a little behind. I always monitored them for him and tried to work through it. Much frustration grew from that moment on for him. Jace always knew what he wanted, but he didn't know how to communicate it with me. Around his one 1/2-year check-up, I brought it up. At this point, they recommended seeing a speech therapist. Due toCovid, it did take a little longer but once we got settled I knew Jace was in great hands. Jace started with speech and he still struggled and that's when his amazing therapist recommended Occupational Therapy to assist with his sensory concerns that we were also having. Later on, we also began the Early Steps program which is an in-home program to assist. Jace has been making great strides in both OT and ST and we have such amazing relationships with all his therapists including Early Steps. They honestly have been the true MVPs always advocating for Jace and his needs. Jace even graduated from two sessions a week to one per week!
The biggest concern now lately is meltdowns, tantrums, and extreme anger. Let me say my son is literally the sweetest little boy ever and can be extremely helpful. However, when he gets into one of his states, I feel helpless and honestly, I don't know what to do. I have been bitten numerous times trying to calm him or when something happened that he didn't like. These also won't last that long and we now do quiet time if we are home. We were concerned. Jace is now almost, but during this 2 1/2 year appointment we brought this up. He rated a moderate risk for autism, so we were sent to see a developmental pediatrician. This took about two months to see them and that is where we are now. We saw them last week where we spent two hours. These two hours including Zach and I speak with her and her just observing Jace. When we got home, I cried. Not because of his diagnosis, but because I felt helpless. As parents, we do everything to shield and protect our children from pain and suffering. When you see your child go through a meltdown with nothing you can do, you just feel horrible. You just want to hug them and tell them everything will be okay.
"Now what?" is now the question. We came home with a blue folder with overwhelming information. I've learned many new terms and programs to aid Jace. I've also learned it can be extremely challenging to get him into some of these programs. Again the therapists I spoke about above are the real MVPs. They have been non-stop with aiding and helping me with all my questions. I also have so many amazing friends guiding me through the steps that would be great to take. When you get to this part, I want to say just step back and take a deep breath. I didn't do this and the first thing I did when I got home was starting the research for ABA (Applied Behavior Analysis). I overwhelmed myself to the point I started to cry again. Please take my advice and take that first day to sit back and unwind everything in your head. The papers will still be there in a few days. Mentally you need to unwind and take everything in. I am still in the process of trying to figure out everything myself and I learned to take it day by day right now. Our lives are going to change, schedules are going to change but it will all be worth it to get him everything he requires.
Additionally, I would like to include this. Please do not judge parents or the individual if you see a child or even an adult having some kind of meltdown. Or doing something that can be disruptive or out of place. Say it with me: I do not know their story. That's right, that person you may call a spoiled brat could be someone going through something you will never understand. A great example is that Jace randomly went through an unprovoked meltdown in a gift shop at Animal Kingdom. We don't know how it started, but it became where Jace was laying on the floor in the middle of this gift shop screaming and crying. We were unable to get him to calm down. The number of disgusted looks and eye rolls we got was astonishing. I started to tear up because I couldn't help him and getting all these angry people around did not help. If you see something like this again don't judge. I've also had an amazing experience at Hollywood Studios when he had another one. An amazing CM came over and diverted his attention literally getting him out of that meltdown. This CM didn't know the backstory of Jace other than it seemed like smiles were needed. This was amazing for us, and I cannot thank that CM enough. Little acts of kindness can go a long way. While yes he was doing his job, we had a few CMs go by Jace in AK and did nothing. Just be kind and empathic.
Talia has been nothing but amazing with this all. Yes, they fight as siblings do but if she realizes Jace is upset she will try everything to help him. She's truly the best big sister and protects her brother at all costs. When he cries because she's playing with something, without thinking she will give it to him. I'm in awe daily to see what she does for her brother. I'm beyond grateful to have her as my daughter and beyond proud of her. I have also found there are so many great resources out there for amazing siblings!
Autism is beautiful. I have come to realize little milestones that Talia had are big milestones that we have with Jace. Jace began saying "love you" maybe at 2 1/2 years old and let me tell you, ugly crying occurred to hear that come from him. Simple things like him counting to five or ten are significant milestones that we will celebrate with him. His facial expressions, when he accomplishes something, are absolutely amazing. My son brings extra magic into our lives. He gives the biggest hugs and kisses. He also the silliest little boy and can make us laugh forever. Autism isn't something we should frown upon but celebrate. I know Jace is going big places in my heart and cannot wait to continue this new adventure with him.
Just know you are never alone, if you get overwhelmed please speak to someone. It can be your family, friends, therapist, or even a support group. I promise, letting emotions out and speaking to someone can help. I'm always opened to talking to anyone regarding it. I am blessed to have an amazing support system and they have helped me tremendously.
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