When we started our journey together him as a new little life and me as a seasoned mom (he was my 4th boy) From the beginning I knew something was wrong. He didn’t look for me like the other boys did, he preferred to be in the bassinette over laying on my chest. He would fuss when held. The doctors basically told me I was nuts when I said I worried something was wrong. A year later I am still telling doctors, something is wrong. “Every baby is different” became their mantra. Developmentally he was just a little behind the other kids, but I could see how smart he was, how he could get into things, sneak things he wanted without anyone noticing. His vocabulary skills were lacking, he would learn a word and have trouble using it consistently.
Then around 2 he just stopped talking. He would cry when you touched him like he was always hurting, I took him to yet another doctor and this time they kinda listened, they started doing tests. blood work, nothing wrong, his vision was okay, he ears were fine. So we started changing his diet wondering if that would help. Nothing. No change at all. Eventually he started talking again, but it was like we had started over, like he was a baby and learning again. In addition to this he would forget words completely, well that might be overstating it a bit. He still knew them, you knew this because he could bring you the items or identify them when asked, but he couldn’t say the word anymore it was almost as if there was a disconnect between his voice and his brain. Still doctors were telling me it is probably nothing and telling me to keep working with him. Friends and family were telling me he was spoiled, and that I didn’t push him enough to talk so he didn’t need to and would only talk when I made him.
Now he and I are both having meltdowns pretty regularly. I thought it was my fault, I was old I needed to change how I parent despite the fact that it had worked with 3 other kids. At this point I stopped listening to doctors, the internet became my tool. I would look things up, get book after book from the library, and try to find an answer. At this point we also realized that I needed more help to figure out how to help him talk. I talked to several speech therapist, each one wanted to see him daily, only one wanted include a parent in sessions and they wanted to do sessions that were very structured which we already knew Zach wouldn’t respond to (a been there tried that kind of thing) We eventually asked a family friend who worked as a tutor. She knew a therapist who specialized in kids with autism. She was Amazing! She worked with me, she saw how involved I wanted to be and tailored her sessions to include me. She realized that Zach needed play breaks otherwise he would overload quickly and eventually shut down and we would lose all progress. She uses structured play. Which is how he has always learned best. He was almost 5. Slowly we gained and stopped losing words. We changed things little by little when one thing stopped working we would work with something else. Each thing we did as a collaboration, she would teach me how to teach him and I would follow up at home. Eventually we went from once a week, to once a month, He went from unable to talk, to taking some, to asking for things and now, we have conversations. At age 13 we finally have a conversation. He still has a long road ahead to be able to converse with others. However I am so thankful for the little things along the way, from yelling at me and throwing things to I love you.
Even when he yells at me and says “You are SO coughing” or asks for thirds of the waffles before we have all had our first servings. To cursing at me for letting it rain in Minecraft.
To brushing my hair from my face and offering to get me meds when he finds me sick in bed.
I know how hard it was to get here but it was worth every single moment, every setback and every tear. He is worth everything. All of my kids are but his fight is what I share with you.
I hope at least one person feels better, is inspired to keep fighting or even just gets a much-needed laugh out of our story.
Now if we could get past the latest clothes regression.. put on some pants child!
Now go take on Monday!
Also a special shout out to my friend Sara over at Gasoline and a Lit Match she was just admitted to the hospital. Keep fighting Chick! You got this!