Prematurity, Developmental Delay and Autism

Yes, this is me. And that little pink dot under my hand is my daughter. She was born 13 weeks prematurely. She weighed 1 pound 11 ounces and was just over 13 inches long. Her head was about the size of a hard baseball.

At the time this picture was taken, she was around three weeks old. This picture, in this place, became my ”normal” for two and a half months.

A battle with Severe Preeclampsia began when I went in for my six month prenatal checkup. I spent the next two and a half weeks in-and-out of the hospital, and finally ended up on Life Flight to a hospital, in a major metropolitan area, that had a reputable Neonatal Intensive Care Unit (NICU). There was nothing more that my small town doctor could do, and I was in danger of losing both my own life, and the life of my baby. I was 25-years old and scared out of my mind. That little pink dot is, now, almost as old as I was then. I cannot imaging how my mother must have felt, but here we are... we both made it!

They took my baby via c-section, to save my life. The guilt I carried, watching her struggle, hooked up to IVs, oxygen, and monitors... it was debilitating. Watching her developmental delay and, eventually, discovering she landed somewhere on the Autism Spectrum... well, the guilt did not subside for many, many years. It did not matter how many people, professional or otherwise, told me that there was nothing I could have done. I always felt like I could have been tougher... that somehow, I could have just “bucked up,” powered through it, and carried my baby to term. I know better... now. Maybe, someday, I will write a blog about having a premature baby. Because, although I believe that my daughter’s prematurity could be connected to her Autism diagnosis, the journey through her first three years of life is a story all of its own. I do, however, need to take you through some of those years now, as the signs of developmental delay, due to prematurity, mimic the most basic characteristics of Autism... thus, the point of this post.

We were released from the NICU three days before Christmas. I took my baby home with an oxygen pack hanging over one arm, a heart monitor hanging over the other, and tubes running everywhere. She weighed 4 pounds 13 ounces, and I was well aware of the developmental challenges that lied before us. She was to have periodic developmental evaluations, and through these evaluations, I learned what to watch for... but, none of it had anything to do with Autism... or so I thought.

My daughter is not my only child. She has an older brother, by five and half years. He was a pistol... ahead of the “curve” in almost everything. He said his first word at 5-months old, and was eating whole green beans off of his high chair tray at 6-months. He took his first steps at 7-months old, and was walking solidly by 9-months. He was speaking in full, conversational, sentences at 16-months, and

by 3-years old was asking, “Why is everything made in China, and you have to be 18-years old or older to call?!” I know, now, that he was ahead of the “curve,” but he was all I knew. I had little else to compare my daughter’s development to. I just knew that her gestational age and her “adjusted” age were far enough apart to make a difference. I was told that everything she did would seem about three months late, since she was born three months early. So, everything that happened “late” was just written off to “Developmental Delay, Due to Prematurity,” and along we would go. Yet, I still thought it odd that my 11-month old daughter did not like mashed potatoes, would not eat anything other than baby food, had only been crawling a short while, was far from taking her first step, and would babble, but had no words. I just kept reminding myself what the doctors and therapists had told me... “She should catch up by the time she’s 3-years old.” We were never offered physical therapy of any kind, no cognitive exercises, no resources that seem to be available to families with premature babies nowadays.

By 18-months old, she was starting to walk, and saying a few words, but no more than two or three strung together. She was an incredibly picky eater, still preferred soft food, and I could not get her to drink out of a sippy cup to save my life! Still, I wrote it all off to developmental delay. Her last evaluation was at 12-months old, and they said that she would not need another evaluation, “...unless something seems out of the ordinary.”

A few months later, I went through a divorce... my second. I relocated, and was now the single parent of one child, and a 4-hour drive from the other, half-time. I knew no one, in this new town, The relevance? There was no one that I knew well, or trusted, that was watching my daughter grow with me. I was totally reliant on my own observations, and it was all so new and different. I really didn’t know what I was looking for, yet... one day, just before my daughter’s 3rd birthday, I called her doctor, requesting another developmental evaluation. Things just were not making sense to me. At almost 3-years old, I was still struggling to wean her off of the bottle. She was still only speaking in two or three word phrases. I could only get her to eat a few different things, and it was the same few things. It was next to impossible to introduce a new food item to her, and if I was successful in doing so, a food item that she had liked prior would fall off of the list. Her playtime interests were very limited, and I could not figure out if that was because she really was not interested in a lot of things, or if there were some developmental delay that was holding her back from playtime interests that were “age appropriate.” And, potty training was barely on the radar. The doctor referred me to the local Education Services District, and I scheduled a home evaluation.

The evaluation came about one week later. It was two weeks before my daughter’s 3rd birthday. The evaluator was very clear in establishing boundaries, during her visit. I was to go about my business and leave her to interact with my daughter, on her own. She thought the evaluation would take about 45 minutes. Of course, I was allowed to observe, but she really did not want me influencing my daughter’s reactions. It made sense. I watched, from afar, at what really appeared to be more “play interaction” than anything. It was interesting to me, as other evaluations, when she was a baby, had so much more to do with her physical development. I waited patiently for an hour and a half!

Finally, the evaluator had completed her assessment. She sat with me, and began to ask me questions. Things like... “Is she a picky eater?”... “Does she always sort her candy, before she eats it?”... “Does she ever do imaginary play with her farm animals?”... ”Does she always line up her crayons, before she starts to color?”...

And, then, the question that kicked me in the stomach... “Has she ever made eye contact with you? Like, ever in her life?”

I sat, silently... trying SO HARD to remember a time that my daughter had actually looked into my eyes. There was not one. There was not one single time, in my daughter’s entire life, that I could remember her looking directly into my eyes. And, in that moment, my heart sank. I didn’t know what it all meant, but what it meant to me... in that moment... was that the mother/daughter bond, that I felt so strongly, did not really exist. In that moment, I knew in my gut, that there was something very, very different about my little girl, and a sadness fell over me.

The evaluator finished her paperwork, and it was my turn to sign. She said that she was going to recommend a full team evaluation, and then she said, “And, I don’t want to scare you, but I am going to recommend that there be an Autism Specialist present.”

I felt like I had been hit with a board. All I knew of Autism was what I saw in the movie “Rain Man.” And, suddenly, it all made sense. The most common thing out of my daughter’s mouth was a very monotone, “Yeah.” No matter what I said to her, or asked her, her response was always, ”Yeah.” Just like the character Raymond, in “Rain Man.” EXACTLY like the character Raymond, in “Rain Man.” Yes, suddenly, it all made sense. I knew in my gut, in that very moment, that my daughter was Autistic. I had no idea what it meant, but I knew!

My daughter and I had been through so much... but our journey was, really, only about to begin.

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