My pregnancy was pretty uneventful, and I had previously delivered a 9-lb healthy girl at term, so when I went into labor at 35 weeks, I didn't think too much about it. I remember that summer being really hot, and it was only June. If I didn't have to go through July with swollen feet and ankles, win one for the momma!
It wasn't until we got to the hospital and the doctor said trying to stop the labor was an option that I even gave it a second thought. A few minutes later, we would find out that I had already reached the point of no turning back and we would have to "deal with whatever situation presented itself." My labor was fairly short, about 4-3/4 hours, and very uncomplicated. The neonatal team was on hand, and we found out pretty quickly that my son's "plumbing" worked very well. We got to meet him for a few minutes, and he was the whisked away to the NICU. He had Apgar scores of 9 and 9, and I remember looking at his fingernails and being relieved that they were fully developed. He was in the NICU for about 8 hours and then brought to me. He was 6 lbs, 6 oz at 35 weeks gestation, but he had no muscle tone and no suck reflex. He would not eat.
We were both sent home the next day. He developed jaundice and still was not eating. Eventually, he did start eating, but he developed reflux. I would hand him to the daycare worker and he would promptly projectile vomit. He failed to hit milestones at the "normal" times. He was not growing. I even had a pediatrician threaten us with Child Protective Services. He developed eczema and asthma. The pediatrician did not acknowledge that infants could have asthma, so he was not given preventive medication. I eventually switched pediatricians at the advice given in a hushed tone by one of the physicians assistants at the previous office, whom I am grateful to still. By the time my son was 2-1/2, he still did not speak. He had almost constant ear infections even though he was on a preventive antibiotic. We started intensive speech therapy at age 3 and he still has it today at age 19.
My son went to a school for children with speech delays when he was 5 years old. He was transitioned to our regular elementary school, and that's when the real issues began. He could not sit still. He was disruptive in class. He ran everywhere. He was not getting on well with others. He still was not talking much at all. He went on medication for ADHD, but he refused to swallow pills. That meant finding a food we could hide the insides of the pill in. We finally settled on Easy Mac. Yes...my son ate Easy Mac for breakfast every morning. The medicine worked pretty well to keep him on task, but it took his appetite completely away. We used to keep him off the medication over the summer just so he would grow. When my son was in third grade, we sat with his teachers and special education folks at a grand table much like I can imagine the Knights of the Round Table sitting around. They suggested that my son might be on the autism spectrum. After I picked myself up off the floor, I listened as they went through all the possibilities. We unofficially used that diagnosis throughout the rest of his elementary days.
When my son was in middle school, we moved to a new district. He did reasonably well with the transition. I guess when you have very few friends where you came from and are really not that interested in making new friends, the transition is not that bad. This new school district did not offer the same level of special education as we had before. We met with a school psychologist who looked us in the eyes and told us our son did NOT have any form of autism simply because he could maintain eye contact. Umm...guess she didn't read the file cabinets full of therapy notes focused on making him do such things. She told us we could take him to another doctor, who would diagnose him as on the spectrum, but that just simply would not be the case. Again, I was picking myself up off the floor. My son had great struggles in middle school that we now have discovered was mostly from pure frustration. His vocabulary was minimal at best, but he had all of these thoughts racing around in his head. He vented those frustrations through misbehavior. Other kids were starting to pick and bully him, but he would never speak up for himself. His last year of middle school, we met with the new school psychologist, who told us to completely disregard what we had been told before. She agreed that our son was on the spectrum, and she would be completing the paperwork to make it official with our stated education department. I was now overwhelmed with the programs and services he was able to receive. Where has this been? Oh well....better late than never.
Once our son got to high school, things were really starting to fall into place for him. He was in the correct learning environment, he was receiving therapy, they were focusing on teaching him how to live independently. My son also loves music, and he joined the high school marching band. I hung around because band was an activity I was very familiar with, and I was able to make a lot of new friends. I asked his instructors to inform the other students of Zach's diagnosis, not as an excuse but as an explanation. For the most part, the other band kids would support him and he flourished as a result.
My son graduated from high school in June 2014. I never thought we would get to that point. Each year, we would have to fill out a skills assessment test for the learning support teacher. I would look at that and sob because there were so many things he could not do. Now, I look at that same form and cry because of all the things he CAN do. My son now works part time in the wee hours of the morning loading Fed Ex trucks. He then goes to a high school extension class 3 days a week and to our local community college for a transitional class between high school and college. I no longer fear leaving him for the day at home. Our next project is working toward getting his driver's license.
This story is long and involved. I apologize for that. I tried to hit the highlights of our journey through the spectrum diagnosis. My son still struggles with social cues and maturity, but he is light years ahead of where I ever allowed myself to dream he could be. We never gave up on him. We forced him to behave in a manner just like "normal" children. It was hard work. I cried thousands of tears. I screamed, I asked why me. Now, I look at where we are, and I feel overwhelming pride and joy. My son has recently found his sense of humor, and he is a riot.
You can do it. You can love your child through the journey. You can go to battle with the diagnosis, with the school, with the doctors. Go to battle with anyone standing in your child's way. The sky is truly the limit if you are willing to work for it.
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