Whether you live in Comanche, Texas or not and whether you know Zach Ingram or not, I can guarantee you that you know him. Why? Because Zach is just one of those people, and every single one of you knows someone just like him. He’s the life of any party, and within fifteen minutes of meeting him you will be torn on whether you want to hug him or deck him…all at the same time!
Yes, Zach was born a character, witticisms falling from his tongue so quickly that few can best him in a running dialog. Bottom line is that Zach Ingram is, quite simply, a lot of fun to be around; however, when I first interviewed him and his wife, Leanne, 2 1/2 years ago, the Zach that I had always known, the Zach that I just described, was not at home. Oh, don’t get me wrong. A young man who looked like Zach Ingram welcomed me into his home, but that was where the similarity ended.
The man who looked like Zach seldom smiled, the fatigue on his face painful to view. The man who obviously had taken over the body of Zach Ingram was a beaten young man, one that I did not know. He never knew it, but I left the Ingram house that night with tears rolling…not one thing that I could do to help him and Leanne. Their son, Drew, was autistic and there was nothing I could do about it.
Last week, 2 1/2 years later, I again made the trek to Zach and Leanne’s home to talk about Drew…to see just what progress he has made, if any. What I found is that many, many changes have come to the Ingram house in the past couple of years, and while I want to tell you about those, both Zach and Leanne insisted that I first tell you about the woman who has done so much to help Drew…the woman who has become a bit of a hero in the Ingram household, Drew’s teacher, Twylah Beaty.
Having heard nothing but praises from Drew’s parents about this teacher’s ability and her great success with their son, I wanted to see for myself just what it is that Twylah does. This meant that I had to first spend some time watching her at work, and I can honestly say that I was in complete awe as I sat in her classroom…and as a former teacher myself, I don’t awe easily!
First of all, you have to keep in mind that Twylah works with very young children, the age range tremendous…from 3 to 9. That alone would be enough to scare me to death! You also have to understand that six-year-old Drew is almost totally nonverbal. Obviously, this makes it more difficult to assess just exactly what he understands, and yet Twylah does an amazing job of working to do just that.
“My class is set up so that we work in 20 minute sessions. Every 20 minutes is scheduled all day long because my kiddos work better with this type of structure. They do NOTHING independently.”
(I can’t even begin to imagine the prep time per day that this woman does….)
“Our goal is for these kids to be independent in society and to be able to live independently. Drew is extremely intelligent. When he came to me, he already knew letters and letter sounds that he had learned from TV and the computer. He is very tech savvy and has had an iPad since he was 4.
“Since he could already make words from letters, that is where I started. Research shows that when you teach an autistic child to read, you teach site words not phonics and, of course, Drew is nonverbal so this is the way he has to learn.
“Autistic children also need the word and a picture of the word. This is how Drew has learned to read. Of course, Drew’s lack of communication keeps him from excelling. I don’t know a lot of what he knows because he can’t tell me.”
So how in the world do you teach a nonverbal child to read?
Twylah uses an iPad and something called LAMP to accomplish what to me would seem impossible.
“Drew uses LAMP (Language Acquisition Motor Planning), which is just an app on an iPad. It can be purchased for $199.99, and we have several kids who use it. They are not all autistic, but they are nonverbal.
“Basically, this program is a computer screen full of words. These words are always in the same place on the screen so he can ‘talk’ to us without ever having to look at his keyboard, which shows both the picture and the word. Drew talks by pushing buttons.
“For instance, he might watch a video and use LAMP to tell us what he is watching. He is not doing it in sentences yet, but our goal is that he will. Of course, people need to understand that while kiddos like Drew may seem different, they are able to learn. We just have to find the key to open those words.”
So why doesn’t Drew speak when there are other autistic children who do? That is relatively simple. There’s not a one size fits all kind of autism that makes everyone with the condition react alike.
“I believe that Drew also suffers from something called Apraxia. This is a condition where the tongue doesn’t move because it does not receive the signal from the brain that tells it to move. Of course, this affects the ability to speak. At the moment there is nothing to do for this condition except a few exercises for the tongue. “
Drew has already been with Twylah for four years and is almost ready to begin a new program called See and Learn. This is a program that pairs the word with its picture but also begins stringing words together to form sentences.
Of course, as Twylah points out, Drew may already be doing this in his mind and we just don’t know it yet. Having watched the little boy work, I’d say that is a very real possibility. Now, having said that, I don’t want to leave you with the impression that everything is coming up roses in the worlds of either Twylah or Drew. There are definitely hard moments.
“It is very frustrating for Drew that when he does try to say a word, very few can understand him. That’s not an easy situation. Also, like everyone with autism, Drew fixates. You just have to figure out what he wants and use that to keep him working. For Drew, what he wants is the iPad. Lots of times I let him watch a cartoon clip that is appropriate as a reward for working hard. Sometimes, he will even “tell” me what he is seeing as he watches.”
There’s no doubt about it. Twylah Beaty earns every penny she makes, and I can guarantee you that whatever that figure is, it is not enough. I was exhausted after only a couple of hours, and yet she gets up every morning of her life and faces another day and another mountain…and with a smile on her face, at that! There’s also no doubt that she loves what she does, loves the children with whom she works so faithfully, and there’s not a single doubt why Zach and Leanne sing her praises every chance they get.
So….Zach and Leanne…how are they doing this many years down this very long road? I’ll give you the nutshell version first: I did not leave their home crying this time. I did swallow a few times, but there were no tears because it is now obvious that Zach and Leanne are going to make it.
“Our whole attitude has changed,” Zach explained. “I was just mad before.”
Leanne immediately chimed in herself. “We thought we could fix it if we went to the right doctors or ate the right foods, etc. We spent a lot of money trying to fix it and I’m glad because now I know…we CAN’T FIX IT. What’s sad is that there are lots of people who will take advantage of people like us with crazy treatments that don’t work.
“I finally had to realize Drew is autistic and that’s not going to change. It’s not going to go away. People are desperate for a fix, and sometimes you just can’t fix.”
Zach was quick to add that there is a chance that things will get better, but that he now realizes that they won’t be fixed.
“Now we try to look at research and things that will help him…great teachers….equipment to read. We’ve talked about stem cells, and I think at some time in the future stems cells will help, but we’re not there yet. There’s just no proven track record for it. It there was even a 10% success rate, I’m sure we would have loaded up and headed to Peru, but there’s just no proof of that yet.
“At some point, you have to accept that it is it is what it is. Even though we expect him to work and improve, the bottom line is that he is autistic. We have to accept it and have a life.”
And…I’ve saved the best for last because Zach and Leanne made a decision these past two years…a decision that they told me 2 1/2 years ago that they would never make. There is a new baby in the Ingram home!! Her name is Caroline, and she was all of the proof I needed to assure myself that life is indeed looking up for all of the Ingrams.
Both parents agree that they thought long and hard about their decision. They also explained that there is a very real possibility that Drew will live with them for as long as they live, and they wanted to know that when they are gone, there would be someone left behind who would love him as family.
Of course, the first question out of my mouth was to ask if the couple was scared. A stupid question, naturally. The answer was written on Leanne’s face.
“We’re still worried because we are not out of the woods yet. She’s a girl, which is big in her favor, but it does not mean that there is no fear for her.”
Although I knew what the answer would be already, I had to ask about Caroline’s immunizations. Both parents answered as one.
“We’re not doing the immunizations!”
There’s no way Caroline’s parents are going to take that chance again. Instead, they do their best to avoid large crowds, refusing to take their daughter out just a whole lot.
Leanne explained that Caroline’s doctor has been very good about the whole situation, whether she agrees or not.
“She gives us a form and we sign it…”
And with 1 in 54 little boys and 1 in 252 little girls having the chance of being autistic, I’m with them 100%.
I concluded my time with the Ingrams by asking them to leave me with some words of wisdom…something people can hang their hats on, so to speak.
“Today, we just want others to know that there are some very real things that they can do to help their autistic children. Of course, there’s the iPad and the LAMP program. They also need to research augmentative communication, and research is the key. Parents also need to make sure their children are seeing the best there is like the doctors at Cook Children’s Hospital.
“As more and more parents lobby, coverage is going to get better. Early intervention is the key so parents need to do something as soon as they suspect that something might be wrong. It’s not easy to admit that there might be a problem, but it is the best hope for the child.”
As I said last time (and I’m sure will say again), there is a reason why the odds of having an autistic child have continued to spin out of control over the past 30 years. If it is not the immunizations, then it is the chemicals in what we are eating or what we are drinking. There is no other answer since that is all most of us have in common.
These people need an advocate in the government who will fight for them…even if it turns out that the answer is not something the government wants to hear…
And with that I will leave you with the bottom line as I see it: The Ingrams are going to be okay. Zach and Leanne are going to make it. Baby Caroline is a precious reminder that life, even in the middle of the storm, is still good, and best of all, Drew is healthy, happy, and making progress though the promptings of a teacher who really loves him.
God Bless Them All!