Words of Encouragement

I want to share with you several things that gave me great comfort and help at what was a very difficult time in my life. Probably the most difficult time.
First, here is Emily Perl Kingsley’s fabulous essay “Welcome to Holland.” I don’t recall the first time I came across this, but I do remember that when I read it, it rang true and I very much appreciated and could identify with the emotions she shared. When she mentions the pain that will “never, ever, ever, ever go away”, I always get choked up.

“Welcome to Holland” by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability–to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It is like this . . .
When you’re going to have a baby, it’s like planning a fabulous trip–to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo’s David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t sent you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there awhile you catch your breath, you look around . . . and you begin to notice that Holland has windmills . . . and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy . . . and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away . . . because the loss of that dream is a very significant loss.
But . . . if you spend the rest of your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things . . . about Holland.

This next little poem meant a lot to me when I came across it as well. I also don’t recall where I first saw it, but ever since I found it, I’ve kept a copy in my journal and when Alex was little, I read it frequently.

“My Broken Doll” by Ted Farrell
A broken doll was sent to me,
From heaven up above.
A broken doll to have and hold,
A broken doll to love.
My joy was turned to sadness.
My life I thought was done.
I’d hope the doll I would receive
Would be a perfect one.
It’s srange how that which seemed so sad
Should be a joy and fun.
I thank God for this priceless gift.
My broken doll, my son.

I read this next poem in a religious magazine called The Ensign. Although not specifically about being the parent or sibling of an autistic child, I believe that many feelings about adversity are universal and I just love her unexpected final line.

“A Lesson in Adversity” by Lisa South
Traveling by bus,
those around me slumbered,
yet sleep eluded me.
I thought how fortunate
my companions were,
oblivious to the aches and pains.
They missed the tedious hours.
They missed the pouring rain.
I envied them so–
until they missed the rainbow.

When my son was first diagnosed, I had no clue as to what was going to happen, how this would affect my life, my family, or anything. I questioned how I would even get through this experience. Many people, no doubt, are familiar with the hymn “How Firm a Foundation”, especially the first and second verses. However, it was verses 3 and 4 that made a huge difference in my life. I careful printed the words onto index cards and taped them to the wall above my kitchen sink. As I would wash the dishes every day, I’d focus on the message in these lines and I came to feel that God WAS helping me, strengthening me to bear what I had to bear.

Verse 3. Fear not, I am with thee; oh, be not dismayed,
For I am thy God and will still give thee aid.
I’ll strengthen thee, help thee, and cause thee to stand,
Upheld by my righteous, upheld by my righteous,
Upheld by my righteous, omnipotent hand.
Verse 4. When through the deep waters I call thee to go,
The rivers of sorrow shall not thee o’erflow,
For I will be with thee, thy troubles to bless,
And sanctify to thee, and sanctify to thee,
And sanctify to thee thy deepest distress.

This last item I want to share is one paragraph from an address entitled “The Moving of the Water”, by a leader in the LDS church, Boyd K. Packer. By an uncanny coincidence (or not!), this address was delivered April 11, 1991, just three days after Alex’s initial diagnosis. I read these lines over and over, every time I needed a little boost. I gave each of my children a copy. I treasure these thoughts.

“You parents and you families whose lives must be reordered because of a handicapped one, whose resources and time must be devoted to them, are special heroes. You are manifesting the works of God with every thought, with every gesture of tenderness and care you extend to the handicapped loved one. Never mind the tears nor the hours of regret and discouragement; never mind the times when you feel you cannot stand another day of what is required. You are living the principles of the gospel of Jesus Christ in exceptional purity. And you perfect yourselves in the process.”

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My Favorite Picture of Alex

I truly hope the words I have shared here might bring a measure of comfort and peace into your life.

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Guilt-Ridden Freedom

The only time we don’t worry about Alex is when he is sleeping. And even then there is some degree of monitoring. I have, out of necessity, become an incredibly light sleeper. At one point, I woke up every 2 hours to listen for his sounds. It was easy enough to make sure he had not escaped the house: if he was awake, which quite often he was, I’d hear him bouncing, or “ah-gee”-ing, or crying. It’s a given that if Alex is awake, he’s making noises and in constant motion. Paul and I bought devices to mask the Alex noises. Note I said “mask” and not “drown out” because I can still hear him, even WITH the ocean surf roaring, the monks chanting, and the fan on its highest setting.

An offshoot of constantly listening for Alex’s sounds is that we all hear “phantom” Alex sounds. We think we hear him, only to realize: “Wait! He’s not even home!”

I think my sleep disturbances stem from always having to be “on”. On guard, On alert, On watch at all times. One way my husband and I cope with this stress is by taking turns. We take turns going to church, going to children’s concerts and plays. We alternate which play performance we attend, or switch off spring/winter concert. These days we try to get a respite provider for Alex so we can attend certain events together, but when Alex was younger this often was just not possible. Paul even missed one of our son’s weddings because we had no one to stay home with Alex. We had taken Alex to our younger son’s wedding in another state a few years earlier. The airport was a nightmare, the plane ride almost as bad. By the time we got home we were utterly exhausted from the ordeal.

When my husband’s twin brother died, Kathleen offered to stay home with Alex so we could go to the funeral and we gratefully left the two of them at home. The very thought of bringing Alex to an unknown church packed with people, for who knows how long, with us being grief-stricken, trying to keep him quiet and still, and not being able to predict how he would behave, struck terror into my heart. I did not even want to consider bringing him with us.

Special events are not the only times that are difficult. Vacations were, and sometimes still are, extremely stressful. When Alex was small, he’d be okay for one night away from home, but the second night he’d put on his coat and pace back and forth in front of the door. We had to barricade the door and sleep with one eye open for fear he’d try to get out of the hotel room and head for home. It wasn’t easy taking him places. Where would we be going? How long would we be there? We’d have to bring toys, food, books, clothes, extra headphones, etc., etc. We had to consider what might be upsetting to him in that environment. How many people would be there? What if he jumped up and down and bit his hand and made lots of noise? What if the environment was too noisy?

In any situation, one of us was always at the ready to leave with Alex when he became over-stimulated by lights, sounds, crowds, or whatever might be causing him discomfort. I go by myself to many parent nights, science fairs, concerts, plays, and so on, while Paul stays home with Scott. Now that he’s older, we occasionally leave Alex with a respite provider so that we can attend an event as a (almost complete) family. The decision we faced each time: feel guilty for leaving him behind, or bring him along and not enjoy ourselves at all.

One year, Alex went to California with a group for a facilitated communication conference. Six days without him? It felt practically obscene how much I reveled in the freedom. We could go anywhere anytime we wanted; we weren’t restricted by bringing Alex and worrying about all the different scenarios of what disaster could happen; we weren’t restricted by what time to leave/return home based on when he was getting picked up/dropped off by his community support worker. It’s been nice to have our other children grow up and take charge of Alex, the house, and the dog, so Paul and I can get away overnight from time to time. It’s wonderful to have that time to escape the routines.

You might think all of this would fracture our family, having to split ourselves up like this so frequently. On the contrary, we know what it is to sacrifice our needs and wants to help each other. It has welded us firmly together in a way that nothing else could have. We are fiercely loyal, supremely protective, and ever-vigilant in watching over Alex. When we are all united in purpose, how can we fail? I know we won’t fail. I know with the strength, perseverance, compassion, and wisdom we have gained that we will not only succeed, but do it amazingly.

 

Finding a “Cure” for Autism

I think the only autism “cure” we haven’t tried with Alex is swimming with the dolphins. We, of course, would’ve tried it if we lived anywhere near Florida and hadn’t seen that recent news broadcast about the toddler who was attacked by an alligator. As it is, we’ve given every doctor-approved method, activity, medicine, and diet that we’ve researched a chance. The outcome always being the same: Alex stays the same.

The first big treatment we tried was acupuncture. There was a little boy in Alex’s preschool class whose parents were trying it and he was actually starting to talk! So we found a practioner and began going there once a week. Of course, this meant leaving the other children home alone.

By this time our eldest daughter, Kathleen, was an unusually mature 13-year-old. All of our other children became mature very early–Kathleen, Alan, Jimmy, and even Rose, despite her being two years Alex’s junior. That will happen when you have a sibling with a disability. She bypassed Alex developmentally when she was three and he was five. I have to say that that is still one of the most upsetting events I’ve witnessed as a mother.

I digress. Early every Saturday morning, my husband Paul, and I would head out with Alex, leaving the other children home alone with boxes of colorful, sugared cereals and hours of Saturday morning cartoons. It was a 30-40 minute drive each way. In central New Jersey twenty-five years ago acupuncturists were not found on every corner. We actually enjoyed it though. It gave us an excuse to go on date, kind of. Alex sat in the back, and since he had virtually no language and barely paid us any heed, unless he wanted a snack, it was as though my husband and I were alone in the car.

At the first appointment, the acupuncturist looked at Alex’s fingernails and pronounced that there was a blockage of a particular meridian. His chi wasn’t flowing correctly, I guess. She thought the treatments might help him, so we decided to go for it. On subsequent visits, upon arrival we’d be ushered into a small room where the doctor would gently insert a very fine needle in the center of his forehead, right at the hairline. He never flinched. Then we went back to the waiting area where Alex could play with puzzles, blocks, and books. After 45 minutes or so, we went back into the little room where the doctor removed the needle. Sometimes, not every time, a single drop of blood would form at the site.

We kept at these “dates” for approximately six months. I felt that if we hadn’t seen something in that time, nothing was going to happen. I hoped fervently for something, anything: any change or improvement, no matter how small. We never noticed any difference, so we stopped going. And I missed my Saturday morning dates with Paul.

A few years later we had a similar experience when we began taking Alex to a kinesiologist. It was basically the same scenario: Saturday mornings, long drives, the other children home alone. The kinesiology doctor was also a chiropractor, and he made some spinal adjustments (something like that). He talked to us about diet and other things. He instructed us on one thing that was new to us and probably one of the only things that actually produced results: “patterning.”

Every night, and in the mornings if we could fit it in, we would have Alex lie down on his back on a mat on the floor and do the “patterning.” I would hold his wrists and my husband would hold his ankles and we would alternately raise and lower his arms and legs in a pattern to simulate swinging your arms when walking–left arm and right leg, right arm and left leg–something Alex didn’t do up until that time.His arms usually just hung straight down at his sides. Alex didn’t seem to mind the exercise at all. We did these sessions for some months and finally he began swinging his arms in a normal way when he walked. It would have been interesting to see if Alex made any other progress with this doctor, but we’ll never know because we ended up moving to Vermont for personal and financial reasons.

Shortly after our move, we saw an ad for a woman who was running a therapeutic horseback riding program for autistic and other developmentally delayed children. As I have always loved horses, this was a no-brainer for me! We immediately signed up. I walked beside the horse along with the person leading the animal and two helpers as Alex rode. He seemed to enjoy this; he often smiled and sometimes laughed a little. The riding was meant somehow to regulate his body movements and make him more aware of his body. Not sure any of that happened. We did it for two summers. In Vermont, summers are pretty short, though. Again, it provided time for Paul and I to get away together, practically alone, for a couple of hours.

In 2005 when we learned of the  “DAN! protocol” (“Defeat Autism Now”), we began searching for a doctor who could help us. The “DAN! protocol” was centered around the ideas that autism is caused by a combination of lowered immune responses, external toxins such as vaccines and heavy metals, and problems caused by food allergies. The doctor went through a number of tests (blood, urine, stool, hair) and then according to those results, suggested a regimen of various supplements, vitamins and cutting various foods from his diet: sugar, grains, gluten, dairy, and so on. We found a “DAN!” doctor only an hour and 45 minutes away! (Hooray–another round of autism-sanctioned dates!) The appointments we set up were on weekdays, when the other children were in school. I was really excited about this one; I thought we were going to finally see some results and maybe even cure the autism! Although we kept up with all the testing and the supplements and dietary changes for about a year, eventually the doctor told us–actually he had the receptionist tell us over the phone–not to come back because there was nothing else he could do for Alex. Up until this point, we had been the ones deciding when to call it quits. This time, it was a medical doctor telling us that, basically, our son was too autistic.

(Note: After writing this, I wanted to see if there were any updates on Defeat Autism Now and discovered that it was closed down in 2011. If interested, here is the article about it: http://www.quackwatch.org/04ConsumerEducation/Nonrecorg/dan/overview.html )

We’ve tried auditory integration therapy (AIT), sensory integration techniques, Reiki, craniosacral therapy, massage and craniosacral together, chelation, immunoglobin injections, secretin, drumming, physical and occupational therapies–all with either no results or very limited benefits. We cut out all sugar from Alex’s diet for 6 months with no result. Another time we went gluten free–difficult and costly to do–again, with no change in either his health or his behavior. All that did was starve the poor boy.

Each time we got our hopes up only to be let down. After awhile it became easier not to hope too much. Still, we continued to search, always on the alert for discoveries of new treatments and therapies. Friends and relatives were always asking, “Did you see that segment about autism on 60 Minutes last night?” and sending me articles on autism and various treatments. For the most part, Alex truly hasn’t changed much since he was 4 years old and at this point, I’m thinking he never will. I accept that this is the way he is and that he will most likely stay this way. But, hey, with new advances in science and technology continually, maybe someone will invent an electronic device of some kind that flashes lights or emits frequencies that will be able to change his brainwaves and make him not autistic anymore. Who knows? We haven’t given up hope for a cure, but right now our priority is helping him be happy and comfortable just the way he is.

My Thoughts After Reading “New Survey Method Finds More Kids With Autism”

Once, shortly before my son Alex was diagnosed with Autism, my husband and I were talking to a friend and describing some of the odd behaviors we were seeing in our child. She was amused. She even used the phrase, “Oh, a dictator in diapers!” as if his unusual habits were usual and teasing that he was just a spoiled brat. I think the only thing she knew of autism, and she brought this up in the conversation after Alex was finally diagnosed, was the 1988 movie “Rain Man” with Tom Cruise and Dustin Hoffman. It seems ironic to me now that the movie debuted the same year Alex was born. I’m wondering if, like me, most people had never heard of autism, let alone knew anything about it or understood how it affected the families of those diagnosed with it. We had to explain autism to virtually everyone we met.Now, almost three decades later, everyone, literally everyone, I talk to either has or knows someone with an autistic family member.

In an article I recently read titled “New Survey Method Finds More Kids With Autism,” the author, Maggie Fox of NBC News, stated “a new government survey finds that more than 2 percent of U.S. kids have been diagnosed with autism–or 1 in 45 children aged 3 and older.” Wow! That is an astounding statistic considering when our son was diagnosed in 1991, the rate of autism was 1 in 10,000. What has caused this huge increase still seems to be a topic of debate: is it because doctors have changed the criteria for diagnosis, or is autism truly an epidemic? Well, to begin with, it seems that the “survey method” mentioned in the title is in regards to surveying the parents. Epidemiologist Benjamin Zablotsky says that the “way we ask the parents about autism spectrum disorder can have an impact on the way the parents respond to the question.” Doesn’t that mean the answers are subjective, then, not objective? A therapist or psychologist does not judge the prevalence of, say, depression, by asking a parent about how depressed their teenager is. So it seems like a strange way to try to come up with numbers of children who have autism by merely asking questions of their parents.

As the estimated prevalence of ASD increased significantly in 2014 (2.24%, up from 1.25% in 2011-2013), and the prevalence of “other developmental disorders” declined significantly (4.84% in 2011-2013 to 3.57% in 2014), it sounds as though doctors are diagnosing autism more frequently than other disorders in children. This makes me wonder if something else is possibly going on, either in children’s brains, or in their behavior. Perhaps two decades of infants and toddlers being raised in daycare centers, eating diets of pre-packaged, highly processed foods, and spending too many hours a day with electronic devices is starting to show some negative effects. However, what makes me wonder more as I read this article is how these children are being evaluated for diagnosis.

Even though each year the number of cases diagnosed goes up, there seems to be a sufficient amount of evidence that points to differences in the survey method being the reason for a higher rise in autism diagnoses and not because there are more cases of autism. “NCHS [National Center for Health Statistics] found earlier this year that as many as 9% of children diagnosed with autism don’t actually have it.” As Laurie Alderman states, “These kids have always been there. I started teaching in 1979 and I have always had students who were a little quirky, a little odd, a little rigid.” The professionals in this article seem to agree that children who today are regarded as being on “the spectrum”, in years past would have received a very different diagnosis, such as intellectual disability or mental retardation.

Child neurologist Dr. Max Wiznitzer reports “there’s more money attached to a diagnosis of autism than a diagnosis of developmental language disorder . . . or a learning disability to give you an example.” If children are being diagnosed with autism but don’t really have it, that also causes me to wonder if people are seeking out diagnoses for their children, just to get more services for their child. I hope that is not the case, but Dr. Wiznitzer’s comment seems to hint at the possibility.

Apparently, there has been a major rise in the diagnosis of autism in 8-year-olds – specifically a thirty percent rise between 2008 and 2010. This surprises me that a child is not even labeled “autistic” until their 8th year of life since my son, who exhibited unusual, even abnormal behaviors, was diagnosed with the same condition at 2-years-old. It didn’t make sense to me until just the other day when a woman was telling me about her friend whose 11-year-old daughter had just been diagnosed with autism. At first I was baffled, until she explained that they’ve been going from doctor to doctor, trying to find out exactly what was going on with her child. For many years they tried to understand why their daughter could only understand three words at a time (my son exhibits the same symptom) and they finally got their answer. I suppose what I wonder about the most after reading this article is how are children who attend regular classes, drive cars, go to college, have careers, and get married, getting diagnosed with autism regularly while this couple struggles for several years to get a straight diagnosis for their daughter who has what I believe to be a very specific and major symptom that would actually disrupt a normal lifestyle of maintaining relationships and a career – only understanding three words at a time. That is what leads me to believe that this may be the result of the doctors, therapists, and psychologists as individuals deciding on their own terms what constitutes a diagnosis of autism.

There can be some overlap if a child has several diagnoses. I believe this practice of lumping everyone together on a “spectrum” does a disservice to individuals like my son. He’s not a little “quirky”, “odd”, and “rigid”. He is profoundly disabled. As the article states, “Autism spectrum disorder refers to a large range of conditions, from the relatively mild symptoms of Asperger’s to severe and profound intellectual deficits and an inability to communicate with others.” I’ve never cared for this categorization since it’s institution a few years ago. When I tell someone my son is autistic, they almost always bring up their nephew/neighbor/boss’s son or daughter who is “autistic.” And almost always it is explained to me that this son or daughter drives a car, attends college, or actually has a job, etc. This is in stark contrast to my son who cannot tell you his name, urinates on the floor twice daily, at least, and writes on the walls as soon as he has a pen in hand. I do not point this out to claim my family’s and particularly my son’s issues are greater, but simply to explain that there is a vast difference here that I think needs to be addressed for the good of both sides of the spectrum.

I remember when Alex was first enrolled in school, the special ed teachers would often talk about the “least restrictive environment.” The idea was for each child to be in as normal a school placement as possible, given their abilities. If a student could be in a regular classroom, then the school would provide the necessary modifications to make that possible. My hope is that every child will receive the best learning environment for their growth and development. I don’t mean to diminish what other parents are going through with their children who are on the higher functioning end of the spectrum. I simply don’t understand why professionals are willing to lump together these children when it seems to me they should be looking for different diagnoses that will help these children receive the specific treatment they need and deserve.

 

The Article Web Address: http://www.nbcnews.com/health/kids-health/new-survey-finds-1-45-kids-has-autism-n462596