Tonight, I will turn on my blue coach lights and light it up blue to celebrate the last day of autism awareness month. Our son knows and understands that those lights are meant for him. He calls them "his lights." My husband and I are parents to three preemie boys: 2 living and 1 angel. Our middleman, T, was diagnosed with ASD at 4.5 years old. T was born at 34 weeks due to little amniotic fluid or oligohydramnios as it's written in my chart. We'll never know for sure if this played a role in his diagnosis. When I think back to his birthday, I can't help but get emotional. From Day 1, we knew that something was just off. I was at a routine ultrasound. I was going in for weekly appointments to be safe. Within a minute, the tech informed me that I needed to go to the hospital and that my doctor was already there, so "I was in luck." I really was because a few hours later, our son would be born healthy and breathing!
I got to experience having my baby in my room with me the whole time. It was so different than our first pregnancy. Now, while in recovery from a C-section, the nurse watching my vitals informed me that our preferred peds didn't frequent this hospital. That was a total lie and was my peds ticked off when we saw her 3 days later at our first appointment. So, the in-house peds looked over my totally jaundice baby boy and with his bilirubin levels in the grey area, allowed us to be discharged. Great. I begged for the NICU, for the phototherapy he needed, but it was totally full. He wasn't sick enough to be in there and the nurses reassured me it was a good thing. There were so many births that same weekend. I was at the hospital 2 days earlier for a stress test too! Could two days have made the difference for NICU admittance? We'll never know. So, no NICU, no eligibility for the same program through our county that would have allowed a developmental nurse to come to our home and check on his milestones, no recommendation for early intervention, etc.
When my peds saw him, she just shook her head. Not the reaction a new mother wants from her baby's doctor. She was livid! I asked if I should take him back to the hospital and she told me that I shouldn't. He could really get sick. So, she told me that we were going to do some labs. She called me later on that day and said that she was ordering an at-home bili blanket. It came the following day approaching midnight. It was insane! We took him in for heel pricks for the next two months. I was told to hold off on breast milk and use formula. I felt so defeated. I froze a lot of it, but I dumped a lot of it too. Pumping is what kept me going when our older son was in the NICU. To actually have your baby home, have a good supply, and be told not to use it was really hard. Eventually, his color improved and we were cleared to try breast milk again. He grew and we had more peds appointments. I remember not checking a lot of the developmental milestone boxes. We had poor trunk control and not a lot of eye contact. He smiled though. He slept at daycare. It was as if he knew that he was being dropped off to someone else, totally unimpressed, so he slept unusually long hours. I remember the girls telling me that. He wasn't talking like his brother did at that same age. We had concerns, had switched peds offices at this point, and were told "just get him around other kids and he'll be fine." Right. Our new guy wasn't concerned one bit and years passed.
We started preschool and we made appointments for the basic school district testing and were on a waitlist for testing with a good Psych. Our son knew letters and could spell his name at the age of 2. He was adding numbers at 4. He was smart! He was also doing some interesting behaviors like lining up objects, sorting, eating by color, and was just very particular about things and... he wasn't talking. Luckily, there was a cancellation and an earlier appt opened up with the Psych. I jumped on it. We had multiple testing dates and then finally, the results. As parents, we weren't surprised with the diagnosis. We didn't grieve it as some might because we were literally grieving for our third son who had passed away three years earlier! As angel parents, we were all too familiar with grief and loss. For us, this was different. We jumped into action! Started the process of applying for services, started therapies, I quit my teaching job, got formal training in ABA and became a full-time caregiver to T. Seriously, it was like, "If you got an ASD conference, yo I'll sign up, check out my kid's progress as he lines things up" [music]. It was everything ASD: conferences, webinars, seminars, trainings, informational meetings, THERAPIES, IEPs, emails, PHONE CALLS, bouts of crying, sleepless nights, overeating, etc. For several years, it was like we had a newborn in the house because T was AWAKE at odd hours of the night.
Many families head to the park before or after dinner to exert energy, but for our kiddo, that was a bad play. It woke up his body and he had excess energy. If we went to the park in the p.m., he'd sleep solid for 2-3 hours and then be up as if he had had a pot of coffee! His engine was running, so we went to, you guessed it, a conference that talked about this very thing. For him, all physical activity needed to happen in the a.m. with the exception of swimming. No issues with swimming at night. We've all been sleeping great for years now. It's wonderful! After so many years of trying this and that, driving here and there, attending whatever came to town, we are at a place where we know what works for him. He knows what works for him. He can give himself some of the "squeezes" or deep pressure that he needs. With hard work and still with a smile, he has met so many goals. I had to remind those brick and mortar teachers that he "is doing his very best every single day, are you?" When that became exhausting, school choice led us to private online schooling. It's been a wonderful option for us! With years of (online) speech therapy and the right speech therapist, he is verbal and comprehensible and just a fun person to talk to! My family, the one I am so very lucky to have at all, has dealt with and overcome so much. I am convinced the road won't ever be easy, but hopeful both will have the tools and skills they need to be successful and happy people.
Easter morning, super focused as they built with Lego.
Naethyn's Cake - Year 10 without him.
I know I am late in posting, but just wanted to let you know I am thinking of all of you.
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