Our Journey to a Diagnosis

Let's start at the beginning. My pregnancy with Matthew was a tad complicated. There was spotting in the very beginning that led to bed rest. Then there was the overwhelming morning sickness!!!! OH MY GOSH!! For someone who had rather be hit over the head with a lead pipe than to vomit, that sickness was the worst!! I was hospitalized three times for dehydration. Finally around 4 months, it began to get better. Notice I don't say go away, but I was able to control it by eating a little something almost continuously. Toward the end of my pregnancy, my blood pressure got up a bit, and I was again put on bed rest and lost several pounds due to shedding some excess fluid. (Wish I could lay in the bed and lose weight now!) I was induced four days before my due date because I was already progressing and with the blood pressure thing, we wanted to proceed. I checked in the hospital, was prepped (I'll skip those details as most of you know what that entails!) and the meds were started. Dr. Davis went ahead and broke my water and said the baby was not down far enough, so he manually pushed him there!!! Now that was pleasant! Imagine a man (thank goodness he's not big) putting his hands on your big pregnant belly with you lying flat on your back and pushing on you with all his might. Jason said he was on his tip-toes. Love his heart, he did keep apologizing!! Anyway, Matthew was born about 5 hours after my contractions began, and that was about 4 hours after my love affair with the term epidural began. At birth, Matthew seemed fine other than he made a little humming noise that they were a bit concerned with, and he was monitored and tested which led to no significance.

Fast forward to infancy...The motor skills were the first things that I noticed. Matthew rolled over relatively early, but he did not begin crawling and such when he should have. Then we noticed he was not gaining speech like he should. At his one year check-up, we decided to watch him a bit, because you know kids don't all develop at the same rate. I actually put his motor delays off on him being so big. He was one chubby baby and I didn't think his little feet could hold him up =) At his 18 month check-up, we decided to seek some intervention and have him evaluated. At around 20 months he was seen at the Regional Child Development Clinic in Bowling Green and they gave us the term...developmental delay. Well, how generic is that. I could have told'em that much. We then followed up with a Developmental Pediatrician who is from the Weiskopf Center in Louisville, who comes to Bowling Green to the Commission for Children With Special Health Care Needs. He evaluated Matthew, along with a psychologist, and after some really expensive blood work came back normal, we were officially given the diagnosis of Developmental Delay. We were referred to the First Steps program and they helped to set up a regimen of Speech, Physical and Occupational therapy services that Matthew received at home. A little later we augmented with a developmental interventionist and Matthew was seen by four people per week. A child can only remain in First Steps until their third birthday and after such, loses the home therapy services. At the third birthday, they are transitioned over to the local preschool program. I went and set Matthew up so he could attend when he turned three, but I just couldn't send him. Instead of starting at the very end of February, I waited and started him the following year. He then had two full years of preschool and he received his therapy services while there.

During his final year of preschool, it was brought to my attention that Matthew would need to be evaluated prior to beginning Kindergarten. We once again made the trip to RCDC (Regional Child Development Center). He was evaluated there at the center, they came to preschool and observed him and talked with his teachers, and was again evaluated by a colleague at the center. They sat us down in the lobby and this is when we first heard the autism as a possible diagnosis. Now don't get me wrong, I had heard of autism. But I can tell you quite honestly that I never really considered it in Matthew's case. I will explain more about this a little later. So now I have been run over by a Mack truck named "Autism". They recommended that Matthew be evaluated again by a developmental pediatrician to confirm the diagnosis. Due to lots of insurance problems and such, we did not follow this out at that time.

Fast forward to early February 2006. Matthew was seven at the time of evaluation, but turned eight soon after. We took Matthew to the Weiskopf Center in Louisville on two separate days and there he was evaluated by a Speech Language Pathologist, Occupational Therapist, Psychologist, and finally the same Developmental Pediatrician that he saw prior to turning two. I knew. Deep down I knew. But, I did not want to hear the words. I had told Jason, I can deal with autism. I'm fine with autism. There was two other words that I did not want to hear. But, I knew I would hear them despite my wishes. Not only did they diagnose Matthew with autism, but with mental retardation as well. Simply bone crushing. It seemed so much worse having those words placed on my son's "label". Then when we got the written reports, they rubbed the salt in the wounds a little deeper by stating his diagnosis as ~ autism; severe to profound mental retardation. Here's a little tid-bit. Not all children with autism have mental retardation, and just because a child has mental retardation, it does not mean they also have autism. It evened bothered one "school employee" so much during an ARC meeting that she could not even say the word. She simply said, "and the other". Truthfully, I can say that it no longer bothers me to know that Matthew has that diagnosis as well. I have found that it makes a little more clarification to tell professionals who need to know as much as possible about Matthew, that he has both diagnoses so that they can understand more the level that Matthew is on. (The doctor at the Weiskopf ordered a panel of blood tests to be run on Matthew and I took him to the Medical Center lab and had that done. There was a test for Fragile X Syndrome among others (they took 7 vials of blood that day!) and nothing turned up.)

Of course in this past year we have been to Vanderbilt and most of you know the results from that. They performed a MRI and EEG. There is a lack of white matter in Matthew's brain, and they are unsure if this has resulted in any of his problems or not. There simply is not enough evidence there to prove one way or the other. So that left us right back at square one knowing that our son has autism, severe to profound mental retardation and a lack of white matter in his brain.

I know this has been rather lengthy, but our road to a diagnosis has been a long one. Hopefully in my next post I can explain a little more about why I didn't think Matthew had autism, and I'd like to give an overview of characteristics to be on the lookout for. I'd like to share a little more in detail about my feelings through the process...this post is definitely long enough and has probably either: bored you to tears, lulled you to sleep, or caused you to close out the tab! Just know that it's not always easy to come to a diagnosis. There is no magic medical test to be performed that will lead you to the answer. It takes observations and lots of parental input to come to the answers. It may not always be the answers you would choose, but there's One who makes far better decisions than you or I. =)