......and this Blog
We need to explain a little about ourselves here and how this blog operates, and really how our lives run, because honestly that is what you’re truly reading about.
I am the mom (Aspie Momma) to a former 25 week preemie (2002) and his sister (2003). After my son’s birth, as you can imagine, things were complicated. He remained in the NICU (Neonatal Intensive Care Unit) for two and a half months and then came home on a slurry of medications and monitors. His first year was more or less typical (for a preemie). He had all the regular check ups with the pediatrician, opthomologist, nuerologist, cardiologist, pulmonologist, gastroenterologist (am I forgetting anyone…?) as well as his therapists- speech, occupational and physical. Over the year we pared down the therapists and specialists and he actually only visited the ER once for some retractive breathing(when the chest more or less looks like its caving in when breathing). He seemed to be in pretty great health, developmentally delayed, but we expected that.
When I say “we” in this history, I mean his father and I. After about 7 years together (and a long stretch of healthcare issues with our son) we divorced. For the purposes of this blog I will not talk about the circumstances surrounding our divorce or really refer to him much at all, just in the way that he has visitation with our children, which impacts their daily lives.
The second year is where things started to get tricky. He slowly stopped eating and drinking and was sick very frequently. His development didn’t really progress too much even though we continued therapy services. By his second birthday he was admitted for malnutrition, a decision that I made because his doctor thought he looked “ok.” When the GI examined him, she said had we waited even 12 hours longer, he may have died.
He was admitted for a little over a month and came home on a feeding tube. During the second year, we struggled with feeding issues; he refused to eat orally, but the tube feedings were completely being refluxed. In his third year (after 4 hospital admissions) he finally had a Nissen Fundoplication done (a surgical procedure to create a stronger esophageal sphincter in order to correct reflux), and the GI told me that I was right the whole time. I had wanted some intervention because his reflux was so severe I could not keep food in his body even via tube feeding.
After the Fundo, we got a great dietician to work with us and helped stabilize his feedings and even started to get him to eat orally again. At five years old and in kindergarten, he went to UVA’s Kluge Rehabilitation clinic in Charlottesville and we stayed for a week of daily services. Upon leaving he was about 80% orally eating, a huge improvement. We continued weekly therapy services and doctors appointments and monthly check ins with a dietician and feeding specialist.
After the separation, he back slid a great deal. I knew that behavior was a huge part of his eating, but I also knew that there was something more there. From the time he was a toddler, he just didn’t seem to behave like a typical child. He didn’t hit milestones developmentally that had some sort of social component (like waving) and he didn’t really play with toys as much as he organized them. He never engaged in imaginary play, ignoring toys that looked like they had a function like a tool set because it wasn’t the real thing. Socially, he was a loner, playing with his sister at home, but at the park or in school he kept to himself. He didn’t like being held or touched too much and really seemed to avoid eye contact.
During the time with his father we talked about Autism, be he didn’t believe that that could be an issues, it was just all the preemie stuff. So for years I put it on the back burner. When we separated, I decided it was time to have the testing done. I wasn’t surprised when the result came back and the psychiatrist sat me down to discuss all the points of the study with me. I was however upset that I hadn’t done it sooner and gotten him the intervention he needed when he was younger. We had just dealt with so many life and death decisions with his medical care that I didn’t take much time to consider that there could be another aspect to why my son was the way he was.
He was eight years old when he was diagnosed and I finally was able to get his school IEP (Individual Education Plan) changed to include Autism services and start working towards interventions that would help him.
The “Us” now:
Not long after his diagnosis, we became an us with the inclusion of MacLeod (names and places have been changed to protect the invested individuals) In this blog we write together because we are both integral parts of kiddos lives. Macleod was brave enough (THERE CAN ONLY BE ONE!!) to join us in our journey and loves the kiddos like they are his own. While the kiddos do have time with their bio dad, 90% of the time they are with us, so this blog is dedicated to our lives raising them.
Interestingly enough, MacLeod also has two kiddos who are exactly the same ages (who live with their mother a few states away). He also went through a less than ideal divorce. I could very honestly tell you that after some horrible dating that I thought I would never find a man who was of sound mind to go through life with again. MacLeod proved me wrong and now life seems amazingly lighter with his silly face breaking the tough times. MacLeod writes here because this is also his life now and he wants to be able to share his nuggets with you about joining us in our journey… after we left the dock so to speak. He is an incredible support to me and the kiddos love him, which makes him a winner of course.
Idioms?! I don’t get idioms….
Have you ever talked to an Aspie and said something like “pot calling the kettle black” or “just in the nick of time” or maybe “a piece of cake?” Yes, these sayings can cause much confusion to a person with Asperger’s. After explaining these sayings to kiddo… he walks away with a look on his face that makes me feel like I am the oddball, not him. So here, with tribute to all the wonderful Aspies out there, we call our blog Mountains of Molehills which means that we are making everything much much bigger than it needs to be sometimes. Maybe it will remind us to look at our molehills and actually see them as molehills. One can hope!