When I was 19 years old I married my high school sweetheart. After 4 years of marriage, we found out we were pregnant with our first child! We were so excited and nervous. We had so many expectations and plans on how things were going to be and how our lives were going to change. But we had no idea what God had in store for us. He had plans to mold us and change us. To draw us closer to Him. We never thought that change would happen through our oldest son.
On my first day of maternity leave from my job, and two weeks before my due date, out little guy was ready to make his entrance. After 19 hours of painful labor, and his poor little heartbeat dropping with every contraction, I was wheeled into the operating room for an emergency c-section. C was born 5lb 7oz, dark hair, big brown eyes and barely making a sound. Within minutes of his birth, there were more people entering the room and hushed whispers were heard. They cleaned him off and let me get a picture and kiss. Something was wrong and they had to rush him to the NICU. I saw my little baby about 24 hours later, in the NICU with tubes everywhere.
I later found out that my son was in fact in breach position (no one even checked his position when I arrived), his tummy was so flat they thought he had no insides and had to check him out (he was perfect), and he developed jaundice (common for c-section babies). He spent 7 days at the NICU before we took him home. Besides never being able to breastfeed (I exclusively pumped) he was the healthiest, loveliest and most well behaved baby. Since I’ve had 2 more after him I can even say he was the easiest baby. Little did we know that his exciting birth was just the beginning of our story.
Something is Wrong
C hit all his milestones. It was always at the end of the spectrum but he still was in the normal range. I wasn’t around other kids his age and didn’t have anyone to compare him to. Everyone always said “Don’t compare” him to other kids so I never did.
Our hospital required us to visit a developmental pediatrician for follow-ups every 6 months after his birth. At about a year and a half, he was delayed in playing with blocks. The Doctor suggested getting his eyes checked. It was a difficult appointment, but everything looked fine. C didn’t show any signs of poor eyesight. He started tip toe walking at 18 months.
Because of speech delay in my family history, I paid close attention to his speech. He was definitely delayed! Through our local regional center, C got the diagnosis of speech and language delay and at two and a half years old he started speech therapy with a therapist that came to our home once a week. C learned so much during those few months. And so did I! Looking back I now see that the therapist was a bad fit for him and I wish I requested someone else (that’s a story for another time). The therapist had some concern with his eyesight and we got his eyes tested again. This time we got a referral to an Ophthalmologist. After another very difficult appointment, we got the news. C had terrible eyesight! The poor boy can only see about 4 inches in front of him!
His pediatrician also recommended getting genetic testing done to check for any abnormalities just in case. Through the genetic testing, we learned that C has an extremely rare microdeletion 10q25.1q25.3. It doesn’t even have a name! But most likely C will have other delays and possible health problems. It felt like our world was crashing down around us. What was our little boy’s future be like?
I’m a researcher and this microdeletion is very difficult to research. There’s no one exactly like C. After praying and talking through it, we decided to treat C like any other little boy. Take one day at a time. We would overcome each obstacle as it comes.
C was a very active baby in utero. And he didn’t stop once he was born either. I use to joke that he didn’t learn how to walk…he ran first and then we taught him how to walk. He always ran! And he is fast too! In the back of my mind, I knew that eventually, we would have to get him checked out for ADHD.
When C was in first grade at age 6, he was having a hard time with his super hyperactivity. I changed his diet to model slightly after the Feingold Diet. No artificial colors, flavors, or preservatives. No citrus and no apples. His hyperactivity went down by a third! But it wasn’t enough to help him stay calm in school. He was becoming a danger to himself and others. We officially got an ADHD diagnosis. Even with all the controversy surrounding medication, we decided that was the right path for C. The diagnosis and medication changed our lives. C was still the same hyper, happy, excited, full of life little boy. But now he could slow down if he chose to. He could stop if he wanted to. He was able to learn in the classroom! At this time he was still struggling with speech. He had a small vocabulary and was only at 2-3 word phrases. Once he was on the medication he was able to slow down and start speaking! His speech took off! We finally got full sentences out of our little boy!
As his behavior was changing for the better, we started noticing other things. Little odd behaviors that now that he’s calm are standing out more and more. Autism was never something we thought about before. He had eye contact, he reacted to his name, he didn’t have any of the stereotypical signs of autism. But there were some odd little things he would do. We decided it would be best to have him evaluated.
A few months after his ADHD diagnosis we got Autism Spectrum Disorder Level 2. Not too severe, but not mild. How? Why? Most likely this was all related to his chromosomal microdeletion. How do we go on? What do we do? So many, many questions ran through our heads. All we knew is that we need to trust in the Lord. Three years later we are still figuring things out.
God created my sweet boy. He was put on this earth for a reason. And I have the privilege to be his mama.
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