365 day journey

Today I think I want to talk about the boys. For the sake of my kids and me possibly putting this online, I am going to call my boys by little and big. This way, I can keep their identities safe. Or at least feel like I am. So for reference. Little is my three years old. Big is my 11-year-old.

My husband and I were never the "let's have kids" type, and I had no motherly instinct bone in my body, so when I tell you the day I peed on a stick, and it was positive for the first time, I freaked out. The story of how I found out I was pregnant with big is a crazy one. I was 25 living in Chillicothe, Oh. Yep, that's a place, with my hubby, living our best life, we were in Ohio a year at this point, and my best friend, who I had not spoken to in months, calls me, crying, hysterically. I'm like, "Girl (I'll leave her name out) I need you to slow down and annunciate." She did and told me that her husband at the time told her she was pregnant. I was like, "WHAT? He's crazy." I asked if she had a pregnancy test she said she did; I happened to have one too in my cabinet. We didn't want kids, but we also did not prevent it, so yes, at 25, I randomly had pregnancy tests in our bathroom, don't judge me, lol. So we talked and peed on sticks we caught up. As I said, I had been gone from Chicago a little over a year, and we have not spoken in a couple of months, so we had a lot to catch up on. After about 45 minutes, she got enough courage to look at her test; I was not worried, I knew mine would be negative, so I was in no hurry to look. She looked, it was "negative! Oh, thank god," she said. I went to throw mine away when she asked what was yours, and I looked POSITIVE! I told her I have to go, this test is positive, and I hung up. That's how I found out I was pregnant with my big.

Big is a fantastic kid, very different, very strange. At a young age, I knew he was different. When I tell you mommy's gut, believe it! I wish I did sooner. Big was extremely bright. He knew his ABC before 1, and he knew what an octagon, pentagon, and hexagon were by 1. He learned himself. He is the epitome of a sponge! Please don't get me wrong, I sat with him, did puzzles, read with him. He watched only educational tv, but he truly teaches himself. His brain is unique, now with that came the downside, not very lovey, didn't like cuddles, always said I Love You, but never sounded like he meant it, so it came out Monotone. And his tantrums, oh lord, the tantrums, certain situations he did not understand. And the no eye contact, that drove my husband and me crazy. Me being a first-time mom, I chalked it up to he's a boy, he'll outgrow it, plus the doctors were telling me that big was exceeding in everything he was fine. So I very stupidly listened. He grew up the only child for the most part. I worked a lot to make sure he never needed anything. As he grew, I became increasingly concerned with his social side, and it was like he was brilliant but didn't understand people, and asking him questions got him frustrated. This time he saw a therapist that said he had ADD. I took that diagnosis and left it alone; I knew something else was going on. But I didn't know what to do.

Let's fast forward eight years. I was at work, and the girls were talking about Aunt Flo. And all of a sudden, I realized mine never came. During lunch, I did not say anything and ran to the closest Walgreens grab a test, ran straight back to work, and into the bathroom. POSITIVE. WTF! I called my husband and told him. He said, "I knew something was up with you; you ate an entire box of popcorn in a week. You hate popcorn!" I'm not going to lie; I didn't even realize that the box of popcorn that usually sits in our cabinet for months was gone or that I was eating that much popcorn. So now we have little. He came at 32 weeks, and he did not want to wait. I was in labor forever, and the doctors did not believe me until one nurse asked if she could check me. I said sure, and when I say I never saw a nurse run so fast, I was rushed into the OR to have a c-section. Little was coming; I was 5 centimeters dilated at that time. Usually, dilating would not be an issue; however, I was not supposed to dilate at all. I needed to have a c-section due to complications from having big. (Big was also an emergency c-section) anyway, little came, on his time, not the doctors. The doctor apologized to me and said your contractions were not showing on our screen, so I did not think you were in labor. Geez, thanks doc, maybe listen to the pregnant woman, not some stupid machine. Little stayed in PICU for 21 days. He had to learn how to feed, so he had an NG tube put in, but everything else was ok, well, so it seemed. Little was challenging. Littles cartridge in his one ear did not form correctly. We learned that little had breathing issues, so severe that he could not even catch a simple cold or end up in PICU hooked up to a continuous flow of oxygen and breathing medicine. It became a way of life. I eventually was faced with losing my job, so I quit. I would have got fired anyway, but little could not be in a daycare setting, and I could not work from home, so BAMN, I was forced into being a stay at home mom. Please do not judge me. I know it's a blessing. I fully appreciate it. However, sometimes I do still struggle with knowing all my dreams and hopes pretty much died that day in that PICU unit. But I could never go back to work! I belong with my boys! Little's issues were way more evident than big's. Little loved to cuddle and be held. He would sit and watch movies with me all the time, and it was our thing; he was just as outgoing and adventurous as big. But by 15 months he did not wave bye, or clap, or try to speak, he did not respond to his name, could not point to objects, or do 1 step directions, and when he did say a word, the next day, it was gone, he also did not use his right hand as much as the left, he failed numerous hearing test, so we did a sedated one. He could hear, so that was not the issue, so early intervention got re-involved. Early intervention has been apart of our lives since Little came home since he was pre-mature. They closed his case at six months old because he met those milestones. However, by one, they re-opened his case. Even when going off his adjusted age, he was still exceptionally behind. And OMG, the tantrums, these were like big's tantrums, but on steroids, the only thing that calmed him was rocking back in forth and bubbles. He's now 3, and that is still true.

Going through the process of getting little evaluated was exhausting. Insurance was a nightmare, but as I was going through questionnaire after questionnaire, red flags started going up. How could I miss all these signs? I needed to get Big evaluated, and ASAP. So I went to my pediatrician and asked for a referral to get big evaluated. He said, "your son does not need to be evaluated", "he's real smart; all smart kids act like him." In the meantime, my big was all over the place, interrupting and doing what he does best. The doctor looked my son dead in the face and asked, "Don't you know how to read a room" I lost it at that point, "NO SIR HE DOES NOT, THAT'S THE FUCKING PROBLEM, AND YOU ARE A SHITTY DOCTOR! And I left. That doctor transferred the next day, so hopefully, he took my advice and stopped treating kids! So I was on my own with big, and his behaviors were getting worse. We fought about doing chores, homework, organization, bedtime, being nice, and even asking him simple questions. So I figured maybe counseling would help, or at least help us communicate, so I called a local therapist, went in, and the therapist asked what was going on. I explained everything. He then called Big in and talked with him for a minute. About 20 minutes later, he asked big to sit in the waiting room while we spoke. He sat me down and asked me if I knew what Aspergers is. I said yes, but no. The only reference I could remember was Max from the show "parenthood" and Hank. Oh My Good HANK! My son is HANK. The therapist said, yes, I believe your son has Aspergers. He gave me a number to a neuropsychologist, and four months later, after two 6 hour days of testing, My big was diagnosed with Aspergers (ASD) DMDD and ADHD. In the meantime, Lurie children's hospital evaluated my little, and they told me to wait six months to get services from early intervention first, then they will re-evaluate. Seven months later, little was diagnosed with ASD, ADHD, Mixed -Receptive Lagangue disorder, and Global Developmental Delay. He also has sensory issues that are not diagnosed but noted.

My boys were diagnosed with ASD within the same year; It was a hard blow to me. My first issue was how could I, as his mom, been so stupid and Naïve and not pushed harder for Big? I knew from the time he was six months, and he was different. Why did I give in to the "Oh he's spoiled," "he needs to be disciplined more," "he's so rude," My Big is none of those things. He was a little boy struggling to navigate a world he did not understand. The mom guilt I have is horrible, and I wish I could go back and re-do any trama I may have caused him. And Big, if you ever read this, I'm SO Danm sorry! I should have fought harder for you, and I should have advocated better for you, and I feel like a shitty mom that I didn't! I live with that every day. Nowadays, it's better, and I let go of the parenting style I thought I knew and learned new ways to parent Big. And I will fight and will keep fighting for his success! I've seen so much growth and progress with him since I've changed how I viewed things. There's so much that maybe I'll write a separate piece just on how I had to change.

My Little gets speech therapy, occupational therapy, ABA, social work, and physical therapy 4 days a week. And he now talks. At three and a half, he talks! Not the best, but it's a start! We have moved from sign langue with him to spoken words now, and he's doing fantastic. Both my boys have come a long way. I'll have to write about how different yet the same, they are another day.

Thank you for listing.