The beginning:Missed milestones. Regression. Guilt. Grieving. Acceptance. Hope

fourthofjuly
There are so many things I could say about the beginning of our journey with Weston’s autism and I’ve shared some of it with those of you that are friends with me on facebook, so bare with me if you’ve heard some of this before. When I was a little girl I told my mom that I thought I would have a child with special needs. I had no idea what I was talking about or where that even came from, but I truly believe God started preparing my heart for this journey early on in my life. Getting Weston here was a struggle. Travis and I were young parents when Kalli was born. I got pregnant at sixteen and had just turned seventeen when I delivered her. We got married in June right after we graduated high school. We always knew we wanted more kids, but we just weren’t in a position yet to do that. Then I got pregnant unexpectedly. Even though we weren’t prepared or trying, we were elated. But our excitement was short lived when I had a miscarriage just a few weeks later. We decided then that we wanted to start trying for a second one. It just didn’t happen. Finally, almost a year later we found out we were pregnant again, but again suffered a second loss. We were broken, angry, and just tired so we decided to take a break and consider our other options. Not even a month after the second miscarriage we found out we were pregnant again.This time we waited and didn’t tell anyone until that first trimester was over. We wanted to be excited but we were terrified to have to walk that road again. So we waited, and we prayed. My pregnancy was hard and long but he was a fighter and he stayed put for a long time. I tell you all of this so that you know how much of a miracle and joy he is to us. God used him to heal a part of our hearts that had been broken. God taught us so much through that time. We learned to rest in Him and trust that he would be faithful to give us the desires of our hearts. It was one of the hardest things we’ve ever done, but God WAS faithful.
I went into labor at 20 weeks and I was basically on bedrest until he was born at 34 weeks. That’s a lot of time to sit and think. I knew something was different even when I was pregnant. I had never laid eyes on him except over a monitor, but I knew there was going to be something different about our little rainbow baby. I don’t know why or how, but again I think God was preparing my heart even more for what was coming. Finally on February 23, 2011, my water broke and Weston was born on the 24th. He was perfect you guys. Absolutely perfect. Because he was so early, his lungs weren’t fully developed and they sent him to the NICU in Odessa via ambulance. I only got to see him twice and I never got to touch him. He was almost 48 hours old before I ever got to feel that soft baby skin and even then we couldn’t hold him. I had postpartum depression with Kalli so I was so afraid that the lack of contact would bring that monster back for round two. We prayed every day that God would keep everything balanced and He did. Still, I knew something was just off. That is literally the only way I know to describe it. I remember looking at this perfect little baby, hooked up to all of these tubes laying under little lights and I just prayed that whatever this feeling was that God would take care of it.
Fast forward a few weeks and Weston finally got to come home with us. We were elated. Those first few months were perfect. Our family was complete and we could not be happier. Then things started to change a little bit. He stopped sleeping. I’m not talking normal infant, waking up every few hours to eat. I’m talking the kid never slept. We would go days upon days with no sleep at all. No naps. Nothing. Looking back I have no idea how I functioned. God definitely had His hands all over that. As he grew I started noticing other little things. He was hitting all of his milestones on time as far as talking and crawling, but he wouldn’t walk at all. He didn’t take his first steps until he was around 18-20 months and all of the other developmental milestones he had hit were gone. He had previously been talking and saying the normal things like “mama, dada, cup, more” and one day he just stopped. He didn’t start talking again until he was almost two. When he did talk it was weird. He would call me Jess instead of mama. That’s something people need to understand as well. Autism doesn’t present itself the same for every kid. Some kids hit normal milestones and then regress. Others don’t hit those milestones at all. It just depends on the kid. But because he was developing at a “normal” rate, when he started regressing, I thought I had done something wrong to cause it. I mulled that over in my head all day everyday. I worked with him incessantly trying to get him to progress and it just wasn’t happening. He cringed when we touched him. When people would come over he would crawl to his room and shut the door. He just wanted to be alone in his room away from the noise and crowd.
His first birthday is when I finally said something about there possibly being something not right about his development. All of our family was at our house to celebrate his birthday and he wasn’t having any of it. He screamed 90% of the time and kept going to his room and shutting the door to get away. Anytime I mentioned my concerns to anyone I was always told “he’s fine” “he’ll grow out of it” “he’s just a boy” “ don’t compare him to Kalli, all kids are different”. So I continued to ignore it, but for years that nudging on my heart stayed.
As he got older, I kept noticing other little oddities that just didn’t sit well with me. Anytime we were in a noisy place, like the store or church, he screamed. I’m not talking throwing a little kid fit, I’m talking screaming until he couldn’t breath. And the rocking. This kid could shake the car when we were going 70 down the highway. It was constant. He was frustrated. I was frustrated. Travis and I were fighting. It felt like our entire house had imploded and we were about to just crumble. By this point we had moved back to Andrews and Weston was three. I enrolled him into Mother’s Day Out thinking that maybe he just needed some extra structure and socialization and things would be fine. They weren’t. Nothing changed. Finally one day, his teacher pulled me aside, and I could tell exactly what was coming. She told me she didn’t want to offend me, but that she had worked with kids who were autistic before and she saw a lot of those symptoms and tendencies in Weston. He wouldn’t play with other kids at all. He just sat by himself. He wouldn’t play with toys the way kids typically play. He lined them up by color and size. He wouldn’t roll cars around like they were moving on a road, but he would lay with his face on the ground and watch the wheels go round as he moved it back and forth. The ladder on the firetruck wasn’t used for the little people to save the pretend home; he just raised it up and down over and over. When she said that to me, I had such a rush of emotion. I wish that I could put into words what I felt. I was sad, but ya’ll the relief that my momma heart felt was indescribable. Someone else finally saw what I was seeing. Someone wasn’t making excuses for this behavior anymore. I got him in my car, sat in the driver’s seat and just cried. My mom was with me and she just encouraged me to do what I thought was best regardless of what anyone else thought. I decided that day that I was making an appointment with his pediatrician to discuss it.
People were not happy. I cannot tell you how many comments I got about labeling him and how awful that would be for him as he grew up. Blah blah blah blah. Travis and I were not in agreement at all. I think there’s a difference between moms and dads. Moms see something off with our kid and we jump straight into momma bear mode and do whatever we can to fix it. Dads need a little more time to process things. I’ll talk more about this in another post, but that’s just where we were at the time. Let me just say that I’m not the wife that would go against what my husband says. He is the head of our home and I respect him in that way. We talk and discuss things until we can come up with a mutual decision and if we can’t, I respect his position in our home and I back off. I didn’t this time. I couldn’t. Something in me just could not let this go. So we went to the doctor, he gave us a referral to a pediatric development psychologist and she got us in within a few months.
Those next few months were grueling. Things were progressively getting worse with weston’s behavior. Travis and I weren’t even on different pages about this, we were in two totally different books. So we were fighting constantly. It felt like mass chaos all the time and I was feeling so guilty about so many things. Guilt over my marriage being in shambles, my daughter feeling like she was being put on the back burner, not doing something for Weston sooner, not knowing what to do for him now. I was a hot mess. And we still weren’t sleeping. Three years of not sleeping you guys. Three long exhausting years. Finally the day came for our appointment with the specialist. We were in there for almost four hours. She asked questions, observed, asked more questions and decided she couldn’t make a diagnosis she was comfortable with. Come back in six months. Ya’ll I wanted to cry. I did cry. A lot.
Again, those next six months drug on. It felt like years. At this point Travis and I weren’t talking much at all. Unless it had to do with one of the kids, there was zero communication between us. One day I just broke. I had been praying God would help him support me in this, but it just wasn’t happening. Not fast enough for me anyway. What I failed to realize was that I wasn’t supporting Travis. I was so focused on just making it through the day that I didn’t realize Travis was experiencing the exact same emotions and fears I was. They just presented differently than mine did. God really nailed me on that. The day I broke down and just poured all of this out to him and apologized, things started getting better. Not a whole lot better, but at least he agreed to go with me to that second appointment, because up until that point he wasn’t going. This was my thing that I brought on and he didn’t agree with me so he wasn’t going. Let me pause for a minute to make something extremely clear. Travis is not the bad guy here. He’s a father who loves his kids unconditionally. His heart was broken. He was afraid of what the future might hold for our son. He was grieving. People don’t realize that there is a grieving process that you have to go through with something like this. It sounds weird and funny, but it’s true. It’s a dark lonely place.
Fast forward to April 2014. Our second appointment was here and we spent several more hours of answering questions, filling out paperwork and observing. Going into that appointment I was fairly confident that we would walk out with a diagnosis of ADHD and possibly autism. Nope. Just Autism. I cried. Again. She gave us a bunch of pamphlets, orders for speech therapy and a bunch of numbers for speech pathologist. I cried more, Travis was quiet, and we left. I was so upset that my son would have to walk this road. Knowing the things he could possibly struggle with his entire life. Not knowing how difficult things would be for him. Not knowing anything to be honest. I had done so much research during those months that we waited, but you can’t research your child who hasn’t been through those things yet. I knew our experience would be unique because it’s different for everyone. I was sad, scared, but relieved.
His specialist gave us different things to try to help him sleep at night. The first few nights we tried sleepy time teas and a bunch of other stuff. Nothing worked. I didn’t want to medicate him unless I had exhausted all other possibilities, so I decided to try the melatonin she suggested. Ya’ll. That night, I felt like God himself had parted the skies and come down into my home and given me the most glorious night of my life. Not even kidding. He slept through the night for the first time in his entire life (he was four at this point). It was amazing.
The next few months were a still chaotic but things were getting better. Travis and I were communicating more. Speech therapy was helping and they were giving me ideas and tips to help manage at home. We worked so hard and so often to help him. Things were seriously looking so much better. God restored so much for us in that following year. It hasn’t been all rainbows and butterflies since then. We’ve definitely had our ups and downs. As Weston has grown we’ve run into new challenges and difficult things we’ve had to learn to navigate and again, I’ll talk about those things in future posts. But what I learned through this entire process was that God was faithful in it all. There were days I honestly didn’t think I would make it through. I thought I would end up divorced, splitting my time with my kids, struggling and sleep deprived. God took all of that and He made it all new. He took the guilt I felt about not doing something sooner. He took the fear about what Weston’s future was going to look like. I mean I think about that everyday in different aspects, but the difference is there is no longer fear there. I know God has this in His hand. It’s already planned and even if it’s difficult and I feel like I’m going to break, I know it’s already finished. God’s already worked it out for His glory and that is all I could ask for. That God would take our story and use it for His glory. I don’t have control over what that looks like, but I do know when he lays something on my heart I have to be obedient to that so He can work. That’s how this blog came about. I don’t know why I’m doing this, or if anyone will even read it. But I do know I had several people who held me up during the most difficult days. God used them to keep my head above water. If I can do that for just one other momma or daddy, I’ll write until God takes me home. There are too many of us who have walked this road for us to feel like we are in this alone. I don’t know who this is for, but if it’s you, sweet friend, know I’m here. Fighting with you. Praying for you.

-Jess

4 thoughts on “The beginning:Missed milestones. Regression. Guilt. Grieving. Acceptance. Hope

  1. Leslie says:

    Thank you Jessica for doing this ! Our Journey with Josiah is been a little different, but l can understand you , and if before l admire you , now even more… praying for you ! The future of our boys is in His hands . Leslie

    Like

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