Mother to a child who has been diagnosed with high-risk for autism with sensory processing issues.
A Non-Compliant Mother: Single-grain oatmeal added to his bottle.
Doc, do I need to give you a resume of my experience with children so you take me seriously?
After taking my son, Andrew, to his well-baby visit at three months old, it became clear that the pediatrician didn't give an ounce of credibility to my concerns:
He needs a bottle every 1.5 hours, even at night, and I'm thinking of putting single-grain oatmeal in his bottle to help fill him up.
Pediatrician: Do NOT add any solids to his bottle. It won't help him sleep through the night.
He rarely takes naps. If he does, they are 15-minute power naps, and then he's ready to go. At night, he requires rocking and music for 3-4 hours before he falls asleep. My husband and I are up with him sometimes until midnight, taking turns rocking him to music. Even during the day, he has frequent crying spells, but music seems to calm him immediately—but that's only during the day. Bedtime is totally different.
Pediatrician: What's his favorite song?
Me: Hozier, Take Me to Church, but it's the entire CD.
Pediatrician: I don't know who Hozier is, but it sounds like he may be a colicky baby, and he'll outgrow it.
Me: This isn't colic. It's an awful cry like he's in pain, and he clings to us for dear life.
He pulls his hair when he cries, when he drinks his bottle, and when he sleeps. He sleeps with fistfuls of hair.
Pediatrician: He does look like he's losing some hair. You need to make sure to do tummy time at least 15 minutes, twice a day. You should still be swaddling him in a blanket and his arms should be inside the blanket.
Me: He doesn't nap. He's either in my arms or on the floor on his tummy all day long. He's on his tummy for hours and hours a day. He's losing his hair because he pulls it. As far as swaddling, he kicks his legs up in the air and unwraps himself from the blanket, and then he kicks his legs on the mattress for awhile. He's been doing that since he was a newborn.
Why Won't They Listen?
I was given a printout on why tummy time is so important, and I continued to receive the same printout at every visit until Andrew was 15 months old, despite my insistence on Andrew's hair pulling problem. It appeared the pediatrician didn't hear me when I said Andrew was crawling at five months and using a walker at nine months, at which time, tummy time disappeared entirely and replaced with running time.
I was also given a printout on how to properly bottle feed as well as crib safety—no loose blankets, stuffed toys, pillows, etc.
After reading the printouts and thinking about the pediatrician's demeanor while expressing my concerns and along with his responses, I felt completely insulted. He had obviously concluded that I had no idea what I was doing, right down to the basics of bottle feeding. He either felt I was incompetent or that I was making a big deal out of nothing…I had an inkling it was because I was a first-time Mother.
What did I need to do? Give him a resume of my personal experiences with children? Notify him that my concerns should be given some weight since I was the oldest child of three and that I helped care for them because I was nearly five years older than my first sibling? That I used to work as a medical assistant for pediatricians and for a pediatric urgent care? That I was inundated with babysitting jobs for babies and toddlers when I was a teenager?
What I Ended Up Doing
Against medical advice, I began to add single-grain baby oatmeal into Andrew's bottle. The results were immediate. Andrew went from requiring a bottle every 1.5 hours to every 2.5–3 hours. His cries for feeding became less desperate, and he began to take longer power-naps, up to 45 minutes, although inconsistently and not as often as I wished. At times, he was even falling asleep immediately after his bottle, as if his belly was finally content.
A life-saving discovery: Andrew's love for music.
One day, when Andrew was nearing three months, we were driving to the lab so I could get some blood work. We never made it. A mile away from home, and he began to scream. I pulled over, fed him, burped him, got out of the car and rocked him, but the screaming didn't stop. I changed his diaper and put him back in the car seat. I wouldn't be making it to the lab. I had tried for an hour to stop him from screaming.
I looked toward the radio, the volume all the way down, and see that Hozier's Take Me to Church was playing. Okay, let me turn this up and calm myself down--it was one of my favorite songs. As soon as I turned up the radio, Andrew stopped crying immediately. The next song was Kelly Clarkson's Breakaway. I started driving home. Was he singing? Yes, indeed, and in the same tone. As soon as I pulled into the driveway and turned off the car, the screaming started back up. I ran into the house, put him in his swing and popped in my Hozier CD. Instantly, the screaming stopped and by the second song, he was fast asleep.
The day I discovered music was an instant remedy to his inconsolable crying.
The list of concerns grew as time went by, and the advice I received continued to infuriate me:
- At six months, Andrew would shudder in disgust and often gag when he looked at or touched solid foods (crackers, cookies, Cheerios, etc.). An argument ensued about Andrew having reflux. I was adamant that Andrew's shuddering and gagging was all about sheer disgust over the appearance and texture of the foods—the food never made it inside his mouth. Dinner time was the absolute worst because solid food was in sight, and he would scream when watching us eat. No, I did not take him to the gastroenterologist as advised;
- Bedtime was getting worse. My husband and I were now up past midnight, every night, taking turns rocking him to music until Andrew fell asleep. He would be soaked with sweat, scream, pull his hair and arch his back. No, we did not let him cry himself to sleep in his crib, because I swear, this is an I-am-in-pain cry;
- Andrew was so intelligent (he knew his ABC's by sight at 12 months), but he had a fixation with anything that could or would spin. The obvious toys (cars, trucks) would have him spinning the wheels for abnormally long periods of time. Any toy that did not spin, he would figure out how to make it spin. If he saw a wheelchair or stroller while we were out, he would run as fast as he could to go push it. He had other odd fixations and quirks—he would play with a tag on a stuffed animal and find it fascinating, but at the same time, refused to touch any type of stuffed animal, having the same reaction, shuddering, just like his reaction to the sight of food;
- Andrew craved light and had multiple light toys, and sometimes he would put his face directly into the lights, and it was difficult to get him to stop. If I took a light toy away, he would scream and cry, and this was not your normal temper tantrum. At the same time, he was sometimes overly-sensitive to lights, including lamp lights;
- Andrew required constant music. If there was no music, he would bang his toys repeatedly on the coffee table or have all of his musical toys in front of him going all at once. Andrew danced across the living room to the beat of the music, and although it was quite a sight to see, I noticed at times he was so clumsy that he would trip over his own feet. At the same time, he appeared to be overly-sensitive to some sounds. He would wake up and cry when the fluorescent lights would buzz in the kitchen. He was terrified of the vacuum and the blender, and in the car he would scream if he heard a siren;
- Andrew always wanted to spin and hang upside down.
At ten months, I started to think Andrew was autistic. Although I had worked in the medical field for over 20 years, my knowledge about autism was just about the basics.
At the 12-month well-baby visit, I was again told about the importance of tummy time--still more hair loss. I explained that tummy time no longer existed since the nine month mark. He was running, dancing, crashing into the couches, and adamant about walking everywhere even though he was so clumsy. We hadn't been able to utilize his stroller since he was eight months old because as soon as he saw it, he would scream, and to get him in the stroller was a battle with a win for Andrew.
Since I had been caring for my mother who had just passed from breast cancer, I had to rely on my husband for some milestones: Honey, is he still saying: Dog-dog; hi; Mom-mom?
Yep. Well, I wasn't so sure.
I brought up the amount of physical activity he required. I explained when we stopped the activity, Andrew would throw extreme temper tantrums that really isn't the normal temper tantrum since the crying would sometimes last for hours. I mentioned going to a restaurant and how Andrew immediately dropped to the ground, screamed at the top of his lungs, and arched his back as if he was in severe pain. It took 30 minutes to calm him down. We had to go outside to a dark corner, without lights and people around and hold him tightly and rock him.
Anytime we went out, getting him to the car was a fight, because he never wanted to leave. And getting him into his car seat was absolutely impossible until we turned on the radio or popped in a CD—thank you, Maroon 5;
Still not eating solid foods, and this time the doctor listened to me, partially. He put in a referral for occupational therapy three times weekly. I explained we couldn't afford $150 a week plus the coinsurance for it. The response: Sorry to hear about that. I'll put in the referral.
Something was wrong with my son. I leaned toward autism.
I had been spending the majority of my time the past few months taking care of my dying mother. I dived in at home. I spent every moment at my son's side, refusing to allow him to be in his own world without me. I began to spin wheels alongside him, narrated the repeated pressing of the same buttons over and over again on his toys, I joined in on his constant dance in the living room, crashing into the couches with him, spinning around in circles, utilizing tickle games, and so much more. I joined his world totally and completely and hoped that he would let me in. I didn't allow him to play by himself because he was too content with playing alone, and the way he played was often repetitive and had no learning value. I began to work with Andrew on basic skills like grasping objects. I utilized his love of physical activity, lights, sounds and music to teach him things and hoped that this would also increase his desire to interact with me, therefore, I figured, I could begin to teach him things that he should already know how to do.
The progress was nearly immediate. Although it was exhausting for me, I didn't stop.
At 15 months, I brought my brother with me to the well-baby visit since my husband and I were having a slight argument about changing doctors. I wanted my brother there for a second opinion. During the visit, Andrew was holding my hand and insistent on spinning us both around in circles. The pediatrician didn't acknowledge the abnormality of this repetitive behavior, although he did chuckle and mention his energy level.
Me: I have a question about supplemental formula. Since he isn't eating real food yet, should I give him Toddler, Next Stop formula?
Answer: No. The American Academy of Pediatrics says it's not necessary.
Me: But he only tolerates jar foods and baby oatmeal. You gave him the diagnosis of "unable to eat solids", and I am concerned he is lacking in necessary nutrients.
Answer: Does he like fish?
Me: Uh, he only eats jar foods, and there is no jar food that contains fish.
Answer: Get him to eat fish.
I looked at my brother who had his mouth hanging open in disbelief. And then the doctor handed me a nutritional guide of what Andrew should be eating and the amounts. I refused to take it, and I could only stare at him in shock at his complete and utter lack of understanding and how he appeared to ignore every word I said.
I mentioned Andrew's motor skills. He either had poor hand-eye coordination or lacked fine and gross motor skills. Not only was he clumsy when he walked, tripping over his own feet, but he had difficulty grasping simple objects like blocks, and it seemed all coordination went out the window when he was really hyper.
Lastly, I mentioned that he wasn't really talking anymore and his babble completely disappeared.
Answer: Boys are often slower at developing these skills than girls.
My brother said to dump him.
Again, against medical advice, I started Andrew on a supplemental formula. I was scared to do this since the doctor made it clear not to. I worried that I might overdose him on some sort of vitamin or mineral, perhaps causing a kidney stone, for instance, due to too much calcium. I decided to give him a formula bottle two to three times a week.
I went home, did some reading and found that I could have Andrew evaluated by the state for developmental delays at no cost. Within a few weeks, some pediatric nurses came out and did an evaluation. I sat and watched. My heart sank. He could not perform the most simplest of tasks. I went over my concerns with them, many of which I had told the pediatrician. The concerns I had were actually included as questions on their evaluation papers. Andrew was immediately approved for occupational therapy for motor delay development and the food issue (which they called oral texture aversion), to begin in one month.
We had a psych consult scheduled through the state in December at no cost, about two months later. I was being listened to and taken seriously. I gave a detailed account of almost everything I had noticed that was different about my son from birth to present, and she did not ignore me, look at me like I was a lunatic or make any of my concerns trivial. At the end of the evaluation, she indicated that although she was not allowed to make a definitive diagnosis of autism, she was 100% sure he was autistic. The official diagnosis was: high risk for autism with several sensory processing disorders. I had yet to read anything on autism. I had no idea what sensory processing disorder meant--all I knew and understood at the time is that he craved a lot of input.
The recommendation included occupational therapy, which had just started, speech therapy, and a play-based behavior therapy program…recommending 50-plus hours a week. Behavior therapy would be funded through the state, and due to our low income, speech and occupational therapy would also be funded through the state.
What I feared had been confirmed, but I felt relieved at the same time. We were getting on the right track and help was on the way. I had made progress with him at home, and this was confirmed during the evaluation. He displayed signs of initiating joint attention and shared enjoyment by pulling his father over to the table and pretend feeding him with a spoon. This would not have occurred even a month ago.
On December 31, 2017, at 17 months old, my son sat down on the floor and began to stack blocks—five of them to be exact. I was overcome with joy, and the tears ran down my face. I had been trying to teach him to do this for five months by putting my hand over his hand and teaching him how to grasp and release the blocks. I was certain things would only get better and his progress would be faster, as soon as I had some help from the professionals.
I couldn't have been more wrong.
A year after this video, the speech therapist is now leaning toward a diagnosis of childhood apraxia of speech.
Copying mouth movements
When Andrew was five months old, I noticed he would watch my mouth movements with fascination when I spoke, most especially with the phrase: I love you. He could never quite get his mouth movements right. A one-year-old Andrew still fascinated with how my mouth moves when I say, "I love you."
Andrew joins my world
Before starting behavior therapy, and at about 17 months old, I had made progress with Andrew. He was starting to join my world so I could teach him things. Notice how music and television is required to satisfy his auditory and visual needs—regulating his body. In order to hold his attention, and so he is able to learn, this was an all-day requirement. At the time, I still had no understanding of sensory processing disorder. All I knew was that Andrew needed audio stimulation, visual stimulation and physical play like we need air to breathe. Andrew's occupational therapist immediately commented that unbeknownst to me, I was utilizing a curriculum much similar to something she called "Floortime." She was amazed at the techniques I used to draw him out of his world. I had no idea what she was talking about, except that whatever it was called, it was working.
Teaching Andrew how to roll and bounce a ball
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2018 Jenifer L