On this day, nine years ago, our lives were changed forever by the birth of our first child, RJ. We were a young married couple who were overjoyed to be pregnant and even more happy to have a healthy pregnancy. Just four years before I had been through a very traumatic loss when the family I was nannying for suffered the death of their two day old son due to a heart condition. I had anticipated his arrival with the knowledge that he would be sick and require surgery, but it never really sunk in that he could actually die until I recieved the phone call from his father telling me that he had not lived through the surgery. From that moment on my ideas about pregnancy and newborn babies were permenantly shifted from assuming the best outcome to always being suspicious of the worst.
On the day of RJ's birth I was again slammed with the reality that life and death are only a breath apart. Just as RJ was being brought into the world the doctors and nurses saw something worrisome on his heartrate monitor. He was quickly delivered and within hours had tests done to make sure that he and his heart were completely healthy. This time everything turned out fine. RJ was pronounced healthy and we left the hospital just two days later to start our life as a family of three. Little did we know that we had just stepped over into what I like to call 'The Grey Area'.
At first everything seemed to be alright. We had a sweet little baby boy who was adorable! He did have his moments of fussiness. Was it colic? "Probably" said the Drs. After a while they ran some tests to make sure everything in his tummy was working properly-and all was well. As Baby RJ grew a little older we noticed that he would get VERY fussy at loud family gatherings. He would usually get so upset that he would cry himself to sleep. He was also vomiting a lot for no known reason. Being first time parents I don't think any of this bothered us at the time. We just accepted that he was a sensitive baby and lived our lives according to his needs. It wasn't until into his second year that a little voice in the back of my mind began to wonder if something wasn't right. RJ didn't begin to walk until he was 16 months old. Much later than most toddlers and even more evident to me because the family I was still nannying for had a son exactly the same age. Their son, Andy, started walking just after his first birthday and their older son, Parker, had walked before he was one. I trusted our doctor and agreed that some kids just do things a little later than others.
Over the next few years there was just one unique thing after another to make excuses for in RJ's life. Frequent vomiting, a sudden obsession with monster trucks, he was terrified of balloons, he would scream or cry when any sudden noise scared him, he didn't like to walk barefoot on grass---on and on the list could go. It wasn't until he was in preschool that we finally found a pediatrician that took our concerns seriously. Was it possible that RJ was affected by Autsim?
RJ was tested by the school district and of course he landed in 'The Grey Area'. His symptoms could indicate Autism Spectrum Disorder or they could be some pretty serious anxiety issues. "It was too soon to tell"(that's what we were told). He was doing well in preschool and didn't seem to require any assistance, so we just waited. Eventually we started seeing a wonderful psychologist who began to help us understand how to parent our unique child. RJ had a hard time expressing himself and she helped us find ways to communicate better. It was during this time that RJ's sister, Grace, was born. I remember being very anxious about her health, but for some reason I just had a gut feeling that Grace would be just fine.
RJ continued to have a revolving list of symptoms that were indicative of Autism. His love of monster trucks started at 18 months and never wavered. He would rarely make eye contact with anyone outside his comfort zone of close family and friends. He had a quick gag reflex. And he developed some nervous habits like constantly picking his nose:( Again late in his kindergarten year we had RJ tested by the school district. This time he qualified under Autism Spectrum Disorder. Which means we still don't have a firm medical diagnosis, but he is able to recieve services because according to the tests he may be on the mild end of the Autism Spectrum. After the testing we returned to our pediatrician to find out that a diagnosis isn't necessary unless we intend on giving RJ any type of medication. I was finally getting very frustrated!
What frustrated me? SO MANY THINGS!!! Why did my son have to be affected by autism? Why can't someone, for the love of God, just tell us what's wrong with him so we can fix it? So many things would go through my mind. I remember at one time being jealous of my friend who's daughter has Down Syndrome. Wouldn't it be easier if we could 'see' the problem? So other people could 'see' what was wrong and not think he was weird. What would his future be like? Everything was filled with uncertainty. Grey GREY GREY GREY..................I just wanted BLACK or WHITE!
to be continued....
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3 comments:
Hi! I came over from Marie Green! Welcome to the bloggerhood!
1) Your kids and mine are very similar to the same age: I have a 9-year-old, a just-turned-7-year-old, 2-year-old twins, and a just-turned 10-month old.
2) My 9-year-old boy sounds a LOT like your 9-year-old boy. Rob saw a pediatric neurologist and the p.n. says Rob is "sort of on" the spectrum---not anything to treat, but in that area of issue, more toward anxiety disorder but with autism-type stuff. He has anxiety issues and seizes on things he then has to do obsessively (nail-biting, throat-clearing). He was obsessive about trucks and numbers; now it's just numbers. He doesn't really have friends per se.
But---we have a little bit of an eccentric strain in our extended family, so he fits in okay. In fact, one of our main problems is people in the extended family not knowing what we're talking about when we mention Rob's quirks.
We've ended up thinking it's not a huge deal. Everybody has their own things to deal with, and these are his. He's bright like many autism-spectrum kids are, and that helps: society loves a SMART eccentric. I rarely think about it anymore, except when he meets someone new or starts with a new teacher, and I wonder if things will go well.
Um, this is kind of a LONG first comment.
P.S. The pediatrician was right: 16-month walking is late end of normal---not even "late" yet. (Used to work in an infant daycare.) All my kids have walked late-end-of-normal (15-17 months), but only Rob has issues.
Swistle, thanks for visiting my blog. It's nice to meet mom's with kids in similar situations! Sounds like Rob and RJ could be friends:)
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