Deja Vu All Over Again

Ephraim will be 14 months old this week. Because he was born three months early, his adjusted age is 11 months. He recently had his developmental evaluation completed by TEIS. His gross and fine motor skills are close to age level in nearly every area, and he has even met some of the developmental milestones for a 15 month old! He hasn't, however, met any milestones for communication skills, so he is scoring below four months of age. We had a feeling that his communication skills were more than slightly delayed, and it concerned us that he is making almost no effort to mimic us, but seeing the report in black and white was a bit of a kick in the stomach.

A young woman from Foundations has been coming to our house once a week to work with Ephraim. Just this week she gave us a handful of printouts on the communication skills that are typical for a child who is between four and six months old. Helping Ephraim achieve these skills will be our priority.

Fortunately (or unfortunately depending on how you look at it), we have plenty of experience with communication disorders and delays:

Riley, our 13-year-old biological son, has autism. At six years old he could not tell us his full name, name his brothers and sisters, give his telephone number or address, couldn't identify a single color, shape, letter or number and couldn't even tell us his age. He could, however, sing the lyrics to songs after hearing them only one time and could re-create long scenes from movies after only one viewing. He was both hypo-sensitive and hyper-sensitive. Haircuts were a nightmare because the trimmed hair on his neck felt like needles to him, and he would cry and curl into fetal position at the painful sound of the vacuum, bean grinder or a baby crying. On the other hand, he broke his foot, and we didn't even know it for a week.

Along with various biomedical treatments, primarily the gluten-free, casein-free diet, we battled his autism with Applied Behavior Analysis (ABA). Riley is now up to grade level in every subject except for reading and spelling. He is almost 100% recovered from autism! Most of his delays are now due to his dyslexia, not his autism.

Along came Barrett and Keaton, adopted in 2002 from Guatemala at 14 months old. They were in separate but almost equally horrible foster homes, and they came to us with some major emotional baggage. At the age of two years old, we had extensive testing done at Vanderbilt. We were told one of the girls had severe global delays, and the other had profound global delays. We were encouraged to put their names on the waiting list at the Susan Grey School, were told it was doubtful they would ever develop speech, and they were given IQ's of less than 50.

They seemed much more seriously autistic than our son had ever been, all caused by their early environment. Where Riley's eye contact had been weak, Barrett's and Keaton's were non-existent. Where Riley was lovable and a pretty fair cuddler, they would stiffen, arch their backs and scream for hours if we tried to engage them. Pressed to communicate, they would "zone out" to the point that the Vandy psychologist was convinced they were having petit mal seizures. At two years old, their communication skills were less than that of a two month old.

During this time Foundations was coming to our house once a week, we were taking them once a week to the Bill Wilkerson Speech and Hearing Clinic at Vanderbilt for private speech therapy and a second day a week for a half day of developmental preschool. They were also receiving both physical and occupational therapy. Nothing was working. They spent the hours in their various therapies screaming and kicking the door or sitting like zombies.

So we took matters into our own hands and pulled out the ABA books. The first skill to be learned was to have the children sit in chairs for one second and work up to five seconds. Those first few weeks were awful! We would place them in their chairs, and they would immediately stiffen, slide into the floor and then scream at the top of their lungs for at least two hours afterwards.

Then we discovered the magic of mini M & M's. We would place them in their chairs, say "Good job" and immediately pop in a piece of candy. Bingo!

After that we worked on other skills for months with no progress. I would say, "Do this" and complete a task such as knocking on the table top, clapping my hands, waving bye-bye or sticking out my tongue. Ben would take their hands, copy the action and I would pop in the candy. We progressed to no screaming, but they wouldn't do the action without prompting.

One day it clicked! Remember the scene from the movie, "The Miracle Worker" when Annie Sullivan runs water over Helen Keller's hands and signs "water" over and over? Suddenly it clicks, and Helen runs all over the yard wanting to know the sign for everything. The girls had the same light bulb moment within minutes of each other. Ben would mold their hands into the sign for "more", and I would pop in the candy. After about a million times, they froze, and you could see the wheels turning. Suddenly they signed for themselves until chocolate was running down their faces, and I was out of M & M's. Who cared if they just ate their weight in junk food! Then they hopped down, ran to the water fountain over and over and signed so that I would turn on the water. Then they ran to the back door and began signing "more" so that I would open and close the door. Maybe "more" wasn't exactly the sign for door opening. They had learned they could communicate, and we would respond.

Within weeks they were mimicking so many behaviors and signing so many words, I could no longer write down everything they knew! Exactly one year after their first evaluation, we took them back to Vandy and they saw the same psychologist. She could not believe they were the same children! They were extremely shy but now talking, could perform most of the tasks given to them, they were making eye contact and SMILING! She gave them new IQ scores of over 120 and said it would even be higher if she didn't have to factor in their language delays.

The girls have just begun first grade. They are doing 2nd grade math, are reading at 3rd grade level and write some amazingly-mature essays. They are snuggly, loving, silly, goofy, mischievous and have a wonderful sense of humor.

Today I pulled out those same ABA books for Ephraim. We are in a Catch 22 situation trying to receive speech therapy for him. We can't really say it was very helpful with the twins, so we are giving up the battle for services and will once again take matters into our own hands. I think we will see quick progress because I believe he has great potential. Ephraim is very coordinated, has a LONG attention span, and he's amazingly intuitive with anything mechanical. He's also fearless, is not shy at all, and most importantly, he has bonded with us -- our major obstacle with the girls.

We had our initial ABA session today, and his first task was "tap the table". I would tap the table three times, say, "Do this" and wait just a second to see if Ephraim would respond. Ben would then tap his hand for him, and I would quickly pop in a mini M & M while exclaiming, "Good job!" After only about five repetitions, we could see the wheels turning, and after ten repetitions, he tentatively placed his hand in a fist on the table top. After that, his attention span was spent, but we were very encouraged for our first day.

I am certainly not a psychologist, but I have my uninformed theory on why we are facing these challenges yet again. In the twins' case, they were neglected and ignored during that window of opportunity when children learn the give-and-take of communication. With Ephraim, I believe the overworked nannies were too busy at The Sarah Noble Malnutrition Center caring for the medical and nutritional problems of the children to dwell on developing their communication skills, so again that window of opportunity was lost. Because of Ephraim's extreme prematurity, he was more at risk than many of the other children for missing that opportunity. Our now-five-year-old daughter, who was born nine weeks early, initially had some minor communication delays, and since she is biological, I certainly can't blame her delays on early orphanage life. Whatever the cause, ABA has helped open those windows, and I'm very optimistic that we'll see great gains for Ephraim very soon!