You reads the books, you take great care of yourself but you honestly never think, "what if".
My pregnancy with Conner was very easy until the end when I was 33 weeks pregnant- sick and contracting I went to the hospital thinking they would just give me the magic pill to stop my contractions and send me home to count down the next seven weeks til I have my baby. Sure enough on the second night in the hospital his heart rate dropped so low they told me I was going to need an emergency c-section to deliver my baby. I still remember when the nurse came in the room to check me, took one look at the monitor and zoomed out of the room. Next thing I know there's three nurses and a doctor putting the rails up on my bed and all I could say to my husband was,"call my mom". Sitting in the operating room freezing my ass off the cut me at 1:30am and one minute later a tiny 4lb 9oz baby was out and screaming. My husband had actually fooled me because not but two seconds before I heard his first cry I asked him if they cut me open yet and he said no... Big liar he was!!
You don't think your going to have a baby early nor do you think 4 years down the road he was going to be diagnosed with a Autism. Conner was hospitalized for the first 21 days of his life and young and clueless me thought that was all I was going to have to deal with. Conner was hospitalized again at 13 months because of a seizure and thankfully that's been all of the hospital visits for our sweet Conner.
Now even being a preemie he crawled early and walked early. See for preemies they have what they call adjusted age- which since he was just about two months early he was allowed to be two months late on his milestones until he reached the age of two which then they say he should be caught up. So him crawling at eight month and walking at ten months would be like an on time baby crawling at six months and walking at eight months. This made us feel very good that he was "on time". Now speech is a whole different story. Yes at nine months we started hearing mama and dada and a few other sounds but slowly that started to fade. At Conner's 15 month appointment there were significant red flags for development when we pointed out Conner had no speech and clearly lacked eye contact and was a very hyper baby- so what did they do, they simply wrote a referral to have him evaluated at Kennedy Krieger institute at Johns Hopkins hospital in Baltimore Maryland.
Now this frightened me so much because I did what no mom should do- I researched on the Internet what could possibly be wrong and of course the first thing that showed up on google was Autism! There it was in plain sight but I tried to keep an open mind because my husband, my parents and myself clearly did not think that was a possibility. We sat there for well over an hour watching a psychologist administer the exam which involved block designs and watching him attempt puzzles of all shapes and sizes and hundreds of questions about can he do this or that. They were comparing him to a normal 15 month old to see where he stands. After all this testing the doctor looks at us and says "well he is definitely NOT autistic"! Phew!!! That was such a relief to hear- now the conclusion was Conner was perfectly normal besides the fact that at the time he only had a language skill of a 7 month old. So we were told we needed to find him a speech therapist and with time he would be fine. Still to this day I am angry that this lady didn't see it- the signs were clearly all there and we saw them but I guess nobody wanted to believe.
Thankful that he only had speech delay we went about our lives thinking just maybe one day he will talk- but clearly that did not happen. We did however take him to get his ears checked just to be safe and on our first visit the ear Dr said maybe he needed tubes because he's probably hearing under water and that could be why he doesn't understand- but that was a bust when we returned on the second visit to hear - "Na he can hear fine". So obviously we went on back to- he will talk one day. It was years later when we finally met a pediatrician who knew something was wrong when our newly four year old had no language and barely looked you in the eyes.
It makes me very upset now that I look back and think what was the first psychologist thinking- was she not on her a-game that day or what?! Because of my experience I want you to think if you feel like there might be something off with your child. You are their advocate as their parent. Your the voice that they need.
Lizza, it sounds like you were a perfect advocate for Conner. As for the first psychologist, you already know yourself that developmental milestones fall into ranges that are even more expanded for preemies. It's not an easy task to make a diagnosis at younger ages. What I always hated was the patronization I got from pediatricians (one in particular). "Mrs. Ford, normal two year olds . . ." Ok, I get that. I also "got" that he thought I was an overly worried, YOUNG mother. The reality of the matter is that, although young, I have a brother 16 years younger than I whose care I was very much involved in. When my 17 years younger cousin was born, I basically moved in with my aunt and uncle to help them care for my cousin. I was a mother's helper after school and on weekends for several years for a family in my neighborhood. AND I David had an older brother who had done all that "normal two year old" annoying shit. David was in a league of his own. I knew it. I did what you did and looked for all sorts of causes, even including diabetes, but it all kept pointing back to two options -- autism or some strange expression of ADHD. I went through those "PHEW!" moments when you pass a hearing test, only to return to the same nagging instinct. As an "experienced" mother, it still took me time and courage to really speak my mind and get this thing figured out. As a new mom, look at how well you did! And look at what you are doing now! This is probably your most important post to help others that I've read so far because you are SO right! We Mamas need to stick with our gut. We know, even though it's hard to face. But knowing, we need to work together to find the cause so that we can start working on the solution.
ReplyDeletePeace,
Deb