A Star That Fell Through The Sky

I’ve received the feedback that although drawings, races and the health care system can be interesting, what people really want to know is about what parents of Autistic children go through in their day to day, so this posting is a response to that request. In fact, this is the first of a multi-part series of postings that’ll describe our life with our son up to today. During the course of this series you’ll learn about the symptoms of an Autistic child that started to materialize in our son, how he received his diagnoses, the importance of a support network, the various organizations that helped us, the various therapies he’s received, what’s worked and not worked for us and what’s in store for our future.

Julien was born a healthy 7 pound 7 ounce baby, delivered by Cesarean Section just two weeks before his due date. My wife was in her late 30’s when we conceived, and we had made the conscious decision to avoid a test of the amniotic fluid, so we had mentally prepared for any kind of baby delivered to us. That said, we breathed a big sigh of relief when we were told he had received an 8 in the Apgar scale (a measure of healthiness). We celebrated having made a healthy little boy.

As most new parents are, my wife and I were overwhelmed during the first several weeks as we adjusted to all the new things that parents must become accustomed to – 3 AM feedings, diaper changing, bathing – all things that seem like second nature today. But we quickly settled into a routine – like all parents do – and found that caring for a baby was not that difficult.

Matter of fact, we quickly found that having a baby didn’t mean that your life had to stop. We could take him out to restaurants and he was alert but generally quiet. We even were able to take him to the movies those first couple of years, because the consistently loud noise from the theater put him to sleep. Of course, eventually he became more and more active and he started demanding our attention.

Shortly after he was born, we moved to New England mostly for career-enhancing reasons. Little did we know how important that move would become to us later in life. We moved into a great old house that needed a lot of renovation, rolled up our sleeves and began to feather our little nest that summer of 2000, when he was only 6 months old.

As we worked on the house, we would place Julien in a “safe room” where he’d be protected from dust, debris and paint fumes and hold them there with a baby barrier, the kind that comes up to a kid’s chest and keeps him from walking through a doorway. We would also play videos (mostly from the Baby Einstein series) for him to watch and he would do so happily, but every once in a while he’d come to the doorway and call for us (not using words, just yelling).

I point this out because this is a naturally occurring developmental milestone appropriate for his age, and a sign that he was developing typically. In fact, Julien had hit most of his milestones the first 6 to 9 months of his life….he had held his head up when he was supposed to, recognized mom and dad, smiled and laughed at 3 months (he was a big laugher), turned towards sounds and noises, ate solids, spoke syllables, drank from a sippy cup, cruised holding on to furniture, understood “yes” and “no”, climbed stairs, and on and on.

I didn’t really read the books that tell you what the milestones are, but now that I have so that I can write the previous paragraph, I remember him accomplishing all of these things more or less at the right time. But I now realize that he missed a couple : waving “bye” or “hi”, putting items in a cup, throwing a ball, saying “shhh”. One milestone we were happy he missed was the “curious” stage, where a toddler inspects cabinets contents. We had baby-proofed all our cabinets, but noticed early on that Julien didn’t show any interest in opening and closing doors.

I used to love to put him to sleep. I had learned early on how to sooth Julien and get him ready for slumber. I would cuddle him on my lap, sit in our rocker, read him a story and after he had started to relax, I would sing him songs. His favorite seemed to be “Twinkle Twinkle Little Star”, but my favorite was “Amazing Grace”‘; I’m not a religious person (at all), but there’s something naturally soothing about the melody and words of this old gospel song:

Amazing Grace, how sweet the sound

That saved a wretch like me….

I once was lost, but now am found

Was blind but now can see.

By the end of that year (his first birthday), he was beginning to utter small syllables and make little puttering noises (like a motorboat) with his lips. Nothing really sounded like a word, but we were happy that he was on his way to talking. He also recognized his name; if you called it, he would look at you to see what you wanted – another important milestone reached. A few months later, he was saying “da da da”, which I proudly announced to my friends, and not too much later “ma ma ma”.

Then by a year and three months, he started to speak many of the words we’d been teaching him. If we said “Julien, do you want some water?”, he’d say “water”. If we said “Julien are you hot?”, he’d say “hot”. If we said, “Julien, do you want to play?”, he’d say “play”. We were ecstatic because he seemed to be able to say most words that we gave him. In fact, this was the first sign that something was wrong (a common symptom of Autistic children called “Echolalia”), but we didn’t know it.

The reason we asked him so many questions, is that he would often burst into a crying tantrum, and we would quiz him to find out what he wanted. In fact, he never asked for things by pointing and using simple words to tell their parents, for example, “baba” (for my single friends, that’s baby talk for bottle”) or “binkie” (pacifier) when they want those items, the way toddlers do. These were also clues that something was wrong, but we didn’t know it.

One night, when I was putting Julien to sleep, I didn’t have time to sing to him, so I only read him a story and put him in his crib. He was visibly annoyed that our routine had been disrupted and he started to make moaning noises. I knew what he wanted, but I wanted him to tell me; only he wouldn’t or couldn’t – I didn’t know which. I left the room with him crying and stepped away so that he could soothe himself to sleep this way. He did in fact cry for a long time, but I knew that if I stepped in, it would just prolong the fit, so I stayed just outside of his room and listened carefully. What happened next surprised me.

Julien wound down his crying, sucking in little gasps of airs as his sobs dwindled to almost nothing and he was quiet for less than a minute. Suddenly, I heard the small sounds of a tired one-and-a-half year old singing in perfect pitch:

Amazing Grace, how sweet the sound…

That saved a wretch like me!

He didn’t know the rest of the words, but he knew the tune perfectly and he hummed it until the verse was completed. I burst into the room amazed, proud and confused ….how did he know all those words? Surely if he knew them, he could also ask me to sing the song? I asked him, “Julien, do you want me to sing?” He said “sing”. I sang Amazing Grace a few more times then sang my second favorite bedtime song, “Summertime” by George Gershwin, one he’d also heard many times:

Summertime,
And the livin’ is easy
Fish are jumpin’
And the cotton is high

Your daddy’s rich
And your mamma’s good lookin’
So hush little baby
Don’t you cry

One of these mornings
You’re going to rise up singing
Then you’ll spread your wings
And you’ll take to the sky

But till that morning
There’s a’nothing can harm you
With daddy and mamma standing by.

To my surprise, he sang the first few words of this song as well, and he hummed the rest of the tune until I finished. I stared at his astounded and asked him if he liked it when dad sang to him; he said “Yessss”. I never skipped the bedtime singing again, and after that he often joined me.

Soon after that, we started noticing that he was fascinated by things that spinned….wheels, tops, car tires, pinwheels. We also caught him spinning in place a couple of times. Additionally, we found that he would crawl up to an object on the floor (a toy, the hole where a French door latch would snap in) and then crawl around it to get different perspectives of it. He would do this non-stop for five / ten minutes – even longer -if we let him.

All these things were little inconveniences and peculiarities, but we enjoyed the fact that for the most part he was a quiet little boy that would play quietly with his Thomas trains for hours on end. But interestingly, instead of taking the trains down the track, he would line all his trains in a row, then all his Matchbox cars in a separate group, then other toys of equal category or type, and he would stare at them for the longest time, barely moving them, but rather observing their wheels, picking one up at a time.

My wife was beginning to be concerned that his language hadn’t progressed beyond the few words he would repeat when we spoke, and we started to even think that he was no longer saying the few words that he did know. We also noticed that his crying outbursts became more intense and that he stopped responding to his name when we called him. Slowly but surely, his eyes became glassy and hard to reach with our own gaze. He seemed to be turning inwardly more and more each day.

I am bilingual and had been trying to teach him to speak Spanish by reading to him in the language and saying a few words to him here and there. My goal of course, was to have him speak a few words to my parents when he saw them next….nothing would have made him happier. With his English speech regressing, however, I became concerned that I was making it difficult to learn to speak his primary language. Besides, my wife was now becoming concerned enough that she was asking the pediatrician and he had recommended a test. I felt that everyone was overreacting, so just in case I was creating the problem with my Spanish lessons, I gave up on teaching him Spanish until I could prove that he was language delayed because he had a lot more to process than other kids. In fact, although I didn’t plan for it to turn out this way, I never read another Spanish book to Julien again.

On one vacation, we were flying down to Florida, about an 3 hour flight and we were excited to having him see his Abuelo, Abuela, Tia and cousin Lisi. This wasn’t the first time he’d see them, but it was the first time he’d remember. We had some time planned at the beach and lots of other fun times too, so we were quite excited to get on the plane. Everything was fine at the start, but about an hour into the flight, Julien started to cry. We tried giving him toys, a bottle, a snack, hugs, asking him what he wanted, but nothing seemed to work. As we realized that not only we’d become those parents that can’t make their kid be quiet on a plane but also that our little boy was uncomfortable in some way and we couldn’t deal with it, we got more and more pannicked. As the minutes crawled, his crynig became more intense. Here we were locked in a steel tube which was obviously torturing him in some way and we couldn’t get him out. Was it the changes in air pressure? What it the noise of the jets? Was it the crowds? Who knew? Julien did but he wouldn’t give us a clue. I would have parachuted out with him if he’d told me that it was the plane.

So I did the one thing I knew to do best: put him to sleep. I stepped out of the row of seats assigned to us, took him back towards the bathrooms still wailing in my arms. I rocked from side to side to calm him, but the stress was building up inside me and I probably rocked him too quickly. His crying turned to screaming. I tried singing, the one song that came to my mind because we were flying on a plane….

Daniel is traveling tonight on a plane

I can see the red tail lights, heading for Spain

Oh and I can see Daniel waving goodbye

God it looks like Daniel, must be the clouds in my eyes.

No effect. He now struggled in my arms, arching his head back towards the floor of the cabin and bellowed his pain up the aisle and into the cockpit. It was becoming more and more difficult to hold him and I was at my wits ends, so against my instincts, I put him down on the dirty floor almost in front of the lavatory. He rolled around, crawled a little bit, stood up (still crying, but a little calmer), sat down….then laid down whimpering. His eyes blinked more and more slowly, and shortly thereafter he fell asleep.

He had run out of steam, and whatever had been bothering him seemed to be secondary to the fact that he had to recharge. I let him fall deep into his slumber, scooped him up gently and took him back to the seats. I was exhausted myself at this point, so I decided to close my eyes for an instant, but just as soon as I did, I felt the air pressure changing, the tell-tale sign that the flight was coming to an end. Thankfully, Julien continued to sleep, but it wasn’t long before I had to wake him so that we could belt him in, and as soon as I did, he started to fidget and complain again.

I estimated that I’d spent an hour an hour and forty-five minutes trying to get Julien to stop crying. On this trip, Julien was already a year and three quarters, and at no point during the tantrum had he tried to tell me what he wanted. He never said “No”, “Down”, “Water”, “Hungry”, “Hot”….all words that at some point he’d repeated when we asked him. This time, when I went through my repertoire, he didn’t even answer with those words. In fact, we never really found out why he was upset.

When we returned home, my wife redoubled her efforts to find out what was “wrong” with him. I was sure there was nothing wrong, that he was just a little late in developing his language skills and would often remind her that he was walking with ease, that he had an affinity for mechanical things, that he was picking up a pen and trying to draw, etc. However, I had started to read those “What To Expect When Your Child Is ….” books and noticed that there were other milestones missed. If I handed him an object, he didn’t eventually pass it back, but would rather stare at it endlessly. If I rolled a ball to him, he didn’t seem to have the eye-hand coordination to catch it (never mind to roll it back).

Then one day, my wife came home with some news that would change our lives forever. Our son, our beautiful, perfect little star, had been diagnosed as PDD-NOS (an acronym for Pervasive Developmental Disorder – Not Otherwise Specified), the first diagnosis before Autism is declared. The day that my wife told me, I felt the ground below break open and saw stars fall from the sky. My world was completely changed. Everything I’d ever imagined about my relationship with my son was up for consideration. I imagined the worst.

In fact, the worst had already come, I just didn’t know it.

 

To be continued

Daniel my brother you are older than me
Do you still feel the pain of the scars that won’t heal
Your eyes have died but you see more than i
Daniel you’re a star in the face of the sky

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