As hard as it is for me to believe, it has been 2 1/2 years since we visited with Drew Ingram and his parents, Leanne and Zach Ingram. Next week we will be bringing you an update on Drew and his family. A lot of things have changed in the past couple of years, and we knew you would be interested in these changes. As a refresher, I thought you might want to revisit just where the Ingrams were in life when we last interviewed them.
[Drew’s] beautiful little face has become, at least for me, the face of Autism, a word that many know and yet few understand, a word often shrouded in the mystery of the unknown, leaving thousands of questions and very few answers in its wake.
What causes Autism, this thief that slips unaware into our homes and steals our children out of our very arms? And to where do our once vibrant, alert, social, and verbal babies retreat as they slip slowly into the grips of an Autistic personality? And Dear God, is there anyone out there who cares, anyone who is beating the drums and demanding answers for these precious children and the parents who look on helplessly at something they can’t control and at something they sure can’t change?
And then…there hovers the most horrible question of all: Can Autism actually be caused by the very immunizations we give our children in the name of protecting them, and does someone already know the answer to this question? I just don’t know. I do know, however, that there are basically four things that we all have in common: what we eat, what we drink, what we breathe, and the immunizations we give our children. It seems to me that the common denominator must come from somewhere in this group. Zach and Leanne Ingram agree.
For Zach and Leanne, there was no reason to expect that their lives would be anything but “normal.” Leanne had a perfectly healthy pregnancy and she took care of herself according to the standards of what we know today, including avoiding smoking and drinking alcohol. When the time came, she delivered a perfectly healthy little boy whom they named Drew, and life looked good.
Up until Drew was eighteen months old, Zach and Leanne both agree that he was a perfectly healthy, normal little boy and on a perfectly normal day, Leanne took him in to see their pediatrician for what are considered perfectly normal immunizations, but for some reason Leanne had reservations that day.
Maybe it was a premonition or maybe it was just an overly cautious mom, but for some reason Leanne quizzed her pediatrician about this particular series of vaccines. It seemed to her that an MMR, three other vaccines, and an oral vaccine was a bit of an overload, but her doctor assured her that there was no reason to suspect that Drew would not be able to tolerate this dose.
“So, I took the doctor’s word and Drew had the vaccines, but I was worried,” Leanne told me.
Within a week Drew developed unbelievably serious digestive problems with diarrhea that was anything but normal, even considering that he had just had immunizations.
“Drew’s diarrhea was so severe that it caused bleeding and a rawness that kept him screaming. We began seeing a long list of doctors, none of whom could discover the problem even after a battery of tests,” Drew’s parents explained.
This malady continued for a year and really only began to improve after Leanne took it upon herself to take the gluten (a protein found in grains) and casein (a protein found in milk products) out of his diet.
Because the Ingram’s were dealing with a sick child, they failed to see that Drew was regressing in some areas, or maybe, just like many of us would do, they didn’t want to see. In any case, it was Drew’s babysitter, Gail Coulter, who eventually mentioned to Leanne that there might be a problem. However, even Gail believed that since boys are sometimes a little slower to talk, etc. that maybe they should wait until Drew was two before they allowed themselves to be too concerned.
Leanne admits that in her heart she was worried because Drew had quit talking; however, at that time she did not realize that was a symptom of Autism. She just knew that children younger than Drew were talking much more than he was.
“We waited until he was nearly two before taking Drew in for testing and then on his second birthday, he was diagnosed as being Autistic.”
The diagnosis was based on hundreds of answers to specific questions asked of Leanne and Zach as well as on a series of tests given to Drew such as drawing a straight line, identifying certain pictures, and following simple directions, none of which he could do. However, the huge red flag was the R word…regression. He had once had words, but he had lost them; he once could make eye contact and now he could not…regression.
I can only imagine the emotions that must have swirled inside that vehicle on the long trip back to Comanche from Cook Children’s Hospital. Zach openly admits that he dealt with the problem through denial; doctors aren’t always right, you know. Being a teacher, however, Leanne knew only too well the Autistic road on which her little family now must walk, a road she never in her wildest dreams intended to travel.
When I left you last time, Leanne and Zach Ingram had just learned for sure that their little boy, Drew, had developed Autism. I have to tell you that by this point in their story, which has actually become their journey, I was completely captured, hanging onto every word, tone of voice, and facial expression of the three.
Some thing, some essence, some something that still remains nameless had entered the home of this all-American family and forever changed all of their lives. What was it?
As the evening turned into night, I continued to visit with Zach and Leanne because I found their story so fascinating and so disturbing and so much more than I have words to describe. What is this thing that we call Autism, and how can we protect our children from it?
I learned a lot of words from the Ingram’s that were unfamiliar to me. Stimming is one of those words, and it is a red flag. Derived from the word stimulation, stimming can be seen in autistic children…in movements like a rapid waving of the hands and arms.
Autism is very sensory, affecting the five senses. Children are either hypersensitive or hyposensitive, and Drew is extremely hypersensitive to taste and smell. It is not at all uncommon for him to throw up if he has to go into a public restroom, even one that is not horribly kept.
Drew is also a very picky eater, which is very common for autistic children. If Leanne puts the wrong thing on his plate, it will throw him into a fit of gagging. Both she and Zach were quick to assure me that Drew actually ate most anything when he was little…the gagging and the autistic personality came upon him hand in hand, but as Leanne pointed out, if you don’t know that these things are symptoms of Autism, you don’t recognize them as such.
Because Drew’s, sense of taste and smell are very sensitive, just a little of something can really affect him, but his sense of touch is different. Drew Ingram loves to be squeezed with a lot of pressure. He also loves to be swung because he requires more stimulation for his sense of touch. Drew also does not feel pain like you and I feel pain.
Most autistic children’s sense of hearing is not good, which is why they struggle with language. Drew is a very visual learner, and he learns quickly. This helps him to sign, and he can get his point across with sign language. He also loves music, but not loud music. Leanne went on to explain so many things to me that I did not know.
“Autistic children have trouble filtering out everything around them, like having a conversation with birds chirping in the background. They can’t make sense of it all, and often they will cover their eyes and ears to block out what they can’t deal with.
“Drew can see and listen so much better than we can. One stormy night, the ducks began quacking and out of all that horrible storm noise, he focused on ducks at a tank a quarter of a mile away. He just can’t separate it all.
“This is why autistic classrooms don’t need so many things in them because it is too much for kids who get over stimulated easily. Drew does this a lot.
“Applied Behavioral Analysis Therapy is the gold standard treatment for Autism. It is all about positive rewards and repetition. We find what works for a reward, and we make him work for it.
“We are just starting this, and we try not to just give Drew things without him working for it. We are also teaching him things through repetition. We do things like putting Mr. Potato Head together, over and over and over again.”
I stopped Leanne here long enough for her to admit that this is very hard for her at times simply because it is human nature to want to protect and coddle our children when they have problems. However, she knows that Drew must have this structure to succeed.
“We started speech therapy right away. We also started Early Childhood Intervention, and their people made visits to work with Drew until he was three. At three, the Autism qualified Drew for school.
“Drew works with Twylah Beaty and we just can’t say enough good things about her. She spends more time with him than we do, and he is allowed to attend an extended school year because of his Autism. This means that he goes to school for half a day during June, and it keeps him from getting behind.”
Drew takes the month of July off from school, but Leanne continues to work with him although she admits that he does not work as well for her as he does for Twyla. However, he is an excellent swimmer and can go all over the pool with floaties, with no apparent fear of the water.
“One of the things that is very hard is that Drew is not as loving or affectionate as other children. This is normal for autistic children, BUT he has learned to give kisses to try to get out of working with his speech therapist!”
It seemed that at every turn Leanne, Zach, and I found ourselves back to the subject of immunizations. They have allowed Drew to have no more and in case you are wondering, they have had no problems keeping him in school because of this.
Although I had no knowledge of this, Leanne explained that there is a form that can be mailed to the state, explaining that parents object to their child being vaccinated. Who knew?
“The Denmark vaccination schedule is more along the lines of what we did thirty years ago and their rate of occurrences of Autism is about one in a few thousand.
“Drew has definitely made progress, but it is very slow; however, he used to not point or wave (another red flag), but he does both now. He also says hi and bye spontaneously.
“He used to hum constantly and grind teeth (other things to watch for), but he doesn’t hum at all now and grinds his teeth only some nights.
“Drew really is not too antisocial compared to some. He doesn’t like large crowds, but he loves to be around kids. He doesn’t always know how to play with them, but he loves to be around them. He used to spin in circles, but he doesn’t now. He does still flap his hands, but usually only when he is excited. Of course, all of these are signs of Autism.
“If you’ve seen one, you’ve only seen one because no two autistic children are the same. Some talk but are socially inept; Drew is more social but he doesn’t talk; however, his motor skills are right on target.
“One of the things that makes sense is that there are two types of Autism, one from birth where children are always behind and didn’t meet any of their milestones. The other is Regressive Autism, where symptoms usually show up at about fifteen to eighteen months. They have been grouping these together and studying them that way, but now they are starting research to look at a subset of kids with Regressive Autism, and I think they will find environmental factors.
“When we are here at home we don’t think a whole lot about it until we are around other children. I want people to be aware that regression is a huge sign and early detection gives you a better chance of progressing.”
So, what’s the bottom line? Well, at least to me, it is a heart-breaker.
“We just don’t see how it would be fair to have another child,” both parents told me.
“What would we do? Even something as simple as food, do we let another child eat anything he wants to eat when Drew can’t?
“We’re afraid to have more children. We’ve been told that there is anywhere from a seven to a thirty percent chance that other children will also be autistic.
“The thing that worries us most is what will happen to Drew when we are gone. There is no government aid for autistic children after they are twenty-one, so what will Drew do if he can’t take care of himself? What kind of treatment would he get anyway? Today many are in half-way houses with no one who understands what they need.”
The pain in Zach’s eyes was very real and unmistakable, a dad who just wants the best for his son.
“People get all caught up in wanting their kid to be everything. I used to think about the great education Drew would have and what I would do for him. Now, I just pray he has a chance of graduating…your priorities change a lot…”
Yes, they do, Zach. I don’t see how they could not.
Girls Running Wild recently hosted Drew’s Dash, a fundraiser for the Ingram family. Since so much of the treatment for Autism is considered experimental, it is not covered by insurance, and the financial burden on top of the stress already incurred by the Autism itself is, of course, more than a family should have to endure.
Many of you have contacted me after reading Drew’s story. If you are willing to open your lives and that of your child with me, I would love to capture your story along with Drew’s. Who knows? Maybe in this manner we might some upon some piece of the puzzle that we haven’t been able to see in the past.
Photos From Drew’s Dash: