Autism: Lin and Sam Wessels' Story
Samuel Fisher Wessels was born on January 19, 2002. He was literally an answer to prayer.
Oh yes, I’d prayed long and hard for little Sam Wessels. I wanted so badly to have a child, and I wanted just as badly for my husband to have a son. Quite frankly, neither of us was getting any younger.
After nearly two years of praying unremittingly, it happened.
We were going to be granted our wish for a child! I then prayed for my child every single day, “Please Lord keep him safe….Please Lord protect him. Please Lord keep him well…Please Lord let everything be okay.” One day, on bended knee, I even went so far as to pray for the son that I knew the man I loved more than life wanted so badly! I continued to pray, “Please Lord….”
When we learned our desire was about to be honored, I knew the name our son must have, Samuel. Ah yes, nothing else would do. Samuel from I Samuel 1:20, “…that she bare a son, and called him Samuel, saying, ‘Because I have asked him of the LORD.”
I loved being pregnant, absolutely adored it! It was quite possibly one of the happiest times in my entire life. I loved having that life growing inside me. I loved the anticipation. I loved the responsibility of caring for someone more than I cared for myself. I loved that he was a part of me.
When Samuel was born ten weeks premature, I was scarcely afraid. Oh yes, I was concerned and anxious, but I honestly felt comfortable that all would be well. I even joked at how badly I felt for little Samuel. “Poor kid he’s going to be just like his mother, has to do everything the hard way.” Little did I know….
We worked very hard for the next six weeks. The hospital had many milestones and stipulations which had to be met by both mother and father as well as baby, before baby Sam was allowed to accompany us home. I visited him every day without fail. We followed the rules to the “T”. All we wanted was for our beautiful little redheaded boy to come home, my little copper top. He weighed all of 3 lbs. 3 oz. when he made his hasty debut into this world, but he thrived! So much so, that his doctor told his hometown pediatrician he was doing “remarkably well” when he called to inquire.
Having spent the past forty days and nights in the NICU, having met all the stipulations and required milestones, little Samuel Wessels was allowed to come home! He was so beautiful! Still is! It was February 28, 2002.
We are fortunate here in Iowa, the state offers to assist parents of premature babies until the age of two, at which time they expect they will have caught up to their peers. As a result, Sam was afforded many state services. A nurse came to our home periodically; they tracked his development and kept us armed with any and all pertinent information on raising a healthy child. Sam continued to do well. He was developmentally delayed by exactly two months which was to be expected. We continued to work hard, especially little Samuel.
As a matter of fact, he had done so well, he had been discharged from nearly all of his state services, all but one. I’ll never forget how disappointed the Sioux Valley Children’s Specialty Clinic doctor evaluating Samuel was when I seemed less than enthusiastic that Sam was being discharged from their care for having met their developmental criteria.
It wasn’t that I wasn’t happy for Sam, I was. It was simply that I wasn’t surprised. Like I said, he had already been discharged from his other residual services, including his Early Intervention Educational program. His Health Families’ nurse agreed to continue only because I begged her to, and she too felt it was in Samuel’s best interest to have some professional support until he actually turned two.
As the two year mark approached, it was becoming apparent that something was not quite right. He had lost the few words he had spoken, he became irritated and agitated; we didn’t know what he wanted or how to console him. He seemed indifferent. And there was something new….he flapped his hands, walked on his toes and paced almost nonstop!
As we sat at the kitchen table one day, I inquired of his Healthy Families’ nurse when he began to flap his hands, “What do you think about that?”
“I’m not sure,” she replied, “What do you think of it? Does he do it a lot? Is it something new? Is it something he maybe learned at day care and is mimicking?”
I started, “I….I…I don’t know.”
“It’s okay, you can tell me,” she continued, “I know you’re thinking something, what is it?”
I took a deep breath, “I don’t know why but for some reason it makes me think of autism,” I confessed. And it was true; I had no idea why his hand flapping caused me to think that. I knew relatively nothing about autism. I had had minuscule exposure to the condition but that is what I thought of, nonetheless.
She began to ask me more detailed questions, “Does he still have the same words he had when we visited last month? Has he added any new words? He has lost language? How many words does he have now? How long has it been since you heard him use them? Does he respond to his name? How is his sleeping? What else have you noticed? Would you mind going to Spencer for an MChat?” I began to realize, she was suspect of autism too. Sam was just twenty-two months old.
Of course, we went to Spencer, to one of our state’s hospitals. We saw the same nurse practitioner who’d been following Sam since he’d come home to us. We did an eval and an MChat. I recall her telling me how he wasn’t closing the developmental gap. I recollect her commenting on how he had been closing the gap but that currently it was widening rather than continuing to close.
I remember taking the defensive and asking her if they realistically expected them to catch up miraculously at two simply because they have now turned two, and asked how it was that he could have been doing so well that all of his previous services had discharged him only to find that a few months later he was falling behind. He wasn’t only falling, he was now spiraling downward! I remember the concern in her face and the compassion in her eyes. She was very gracious and understanding. Sam was now two years, ten days old.
It seemed as though time had stopped. Everyone at work asked how Samuels’s appointment went; not knowing it was anything but routine. Of course they’d ask; he’d always done so well! I told them we were in a bit of shock, telling them, “They think Samuel may have autism.”
Exactly one week later, Spencer called with the results. Barb, the nurse practitioner, called us herself. She told me that the results of the MChat came back as significant.
“Significant? Significant for what?” I inquire, “Delays? Developmental delays?” There is an enormous pause; the silence was deafening!
“No, for autism.”
She wanted to know what we wanted to do next. My mind was spinning! “We are not qualified here to give that kind of diagnosis. You can come back in three months and we can evaluate him again, you can go to AEA (Area Education Agency) in Sioux Center and have him reevaluated in three months or we can send AEA to your home. Which do you prefer?”
“I guess it would be best if they could come here,” I suggested.
This is the first time that my husband and I really began to research autism. We turned to the Internet. Absolutely everything I read says that early intervention is the best chance for a better long-term outcome when it comes to autism. I began to wonder why we’ve been asked to wait an additional three months to repeat the same eval by someone still not qualified to give us a diagnosis. Either it is or it isn’t; I wanted to know! We were wasting precious time! So I got on my soapbox. I wanted a referral.
We visited Sam’s pediatrician a few days later and he tells me that he has patients with autism. He’s seen autism in his practice and in his opinion, Samuel does not have autism. I asked him about his language. “Boys are often slower to talk. He’ll catch up,” is the response he offered.
“What about that?” I asked. Sam was pacing around the exam room on his tip toes, flapping his hands.
“So. So what? I’ve seen plenty of other kids do that. He’ll outgrow it. I wouldn’t be concerned.” Our doctor seemed so certain.
“But he does it all the time,” I countered. “He doesn’t respond to his name. What about that? I know he can hear, he doesn’t respond to us.”
“Samuel. Samuel. Samuel! He’s going to ignore me now,” he insisted.
“He does that all the time, too.” I was weary by that point. “What about Barb in Spencer and Melissa from Healthy Families? Their tests show he is ‘significant’ for autism. Can’t we at least get a referral to someone who can evaluate him?” Now, I insisted and he agreee; however, a week later, we still had no referral. I called Melissa, who joined me on my soapbox! She concurred; either he has autism or he doesn’t and the sooner we can find out, the better.
In the mean time, I called around and found out exactly who WAS qualified to give a diagnosis such as autism. There was one doctor and his assistant within a 150 mile radius, so I called her clinic. Her receptionist informed me that it will take four to six months for an appointment without a referral. I called her office directly and got the answering machine. Sobbing uncontrollably into the phone, I begged her to “Please help me help my son.” No one returned my call.
Melissa did eventually get me a referral. She is a wonderful person to have in your corner! Because of a cancellation, we got an appointment for six weeks later.
As the weeks passed, we continued to search for answers via the net. We convinced ourselves our son didn’t have autism. He was loving after all. He didn’t bang his head, scratch, bite, wasn’t aggressive at all. He was just different, that’s all, just different. When they called two weeks prior to appointment day to confirm, I told them we didn’t want to waste anybody’s time when another family could perhaps put that time to better use. Fortunately for Sam, the hospital’s social worker convinced me that it would be best to know for certain and that finding out one way or the other couldn’t possibly be a waste of anyone’s time.
I’ll never forget that day. I try sometimes, but it is etched in my memory forever! It was March 25, 2004. Samuel Fisher Wessels was twenty-six months old. The room was filled with an entire team of evaluators, each doing their part of the evaluation. They kept both Sam and I very busy! There was a two way mirror in the room and we were told we would be observed as we underwent the process.
The entire evaluation took about an hour and a half. The doctor couldn’t get over what an ordeal it was for me to get to this point, to an actual team qualified to evaluate my son. She couldn’t believe the process was so brutal. Then I confessed to being the mom who called and left the message on her answering machine. I couldn’t help but wonder if she remembers and wondered what she must think of me.
The team of professionals left the room to discuss their results. They were gone about a half an hour, although it seemed like an eternity. When they returned, Ms. Mork informed me, “We have your diagnosis; it is autism.”
I tried with every essence of my being to choke back the tears and maintain my composure. I managed to ask, “So now what?”
“So now you need to go out and educate yourself on your son’s condition,” is what I was told. Something about at least one hour of speech three times a week, an OT and a PT eval to see what he qualifies for and blah….blah…blah…I was having a difficult time absorbing anything more.
I stood there in disbelief. So now I need to go out and educate myself on son’s condition. Is she serious? That’s it? Are they serious? Sadly, they were.
The first book I read was a loaner from our local Area Education Agency. It took me more than three months to read it. It was full of medical terminology I didn’t understand and many of the words had to be looked up on the computer as they were medical terms not in my dictionary. It was awful.
I was very depressed because I felt like I didn’t know how to help my son. I felt him slipping further and further away and I didn’t know were he was going. It was a helpless feeling because I didn’t know what to do. It was a very painful time. I cried a lot! I was often angry at our situation and I barely slept. All I could think was, but what about Samuel? What will become of my precious Samuel?
If I could change only one thing about autism today, it would be this: that it wouldn’t take parents so long to get the help their child needs and deserves; after pushing and prodding to get an eval only to be turned loose; alone, forlorn, terrified and bewildered, not knowing where to turn. I understand that in some areas this has gotten better, but in many areas of this vast nation, we’ve got a long way to go.
I, of course, did come to realize that it was up to me to pull myself up, put myself back together, and help my son, because no one else was going to! He needed me and I was not about to fail him.
Since then, we’ve been through the gamut of experiences, therapies and medications. We’ve found that melatonin is very effective for Sam for his sleeplessness. It has actually been a Godsend. We tried Metadate CD (time released Ritalin) when Sam was only four and a half. It had quite the opposite effect from what was intended. We nearly lost our little boy altogether! The sparkle in his eye was gone; he was no longer my incessantly chattering, clever and inquisitive little boy. He seemed as if to all but disappear.
On two different occasions, when trying to accommodate his difficulties in school, he had been prescribed Prozac and Strattera respectively. He was five. I nearly came unglued! It irritated me that they so eagerly reach for psychotropic meds for our small children rather than commit to them the extra time and one on one attention they require to learn and function in the classroom. Does medication have its place? Of course, but it is not the quick-fix, cure-all they’d sometimes have us believe it is.
We’ve had our educational and insurance battles as well. Sam’s mom’s a fighter, like Sam. I’ll not easily forget the time the President’s office called me concerning an Early Access educational dispute I’d written to him about. What made it especially interesting was the fact that the speech pathologist was here, in our home, when I received the call. She couldn’t help but notice as my jaw hit the floor.
We had been battling the system to obtain more speech services for Sam at the time, as our insurance wouldn’t cover private speech sessions. We couldn’t afford $105 for 15 minute sessions with a half an hour minimum. I wrote to our Governor about that one. His office did conduct an inquiry but had no jurisdiction over the private sector.
We’ve done Occupational Therapy, Physical Therapy, Speech and Discrete Trial. We’ve spent thousands of hours on the road going to and from each one. There have been many we would like to try but haven’t the funds, or they are simply not available to us in our area, which breaks my heart! You’d think you’d grow accustomed to hearing; “I’m sorry but I don’t know how to help your son, we can’t help your son, or we can help your son, but you can’t afford it.” But you don’t; you don’t ever grow a thick enough skin to accept that as satisfactory. So, I continue to write my elected officials and see them in person every chance I get. I’ve acquired an entire drawer full of responses from them.
We’ve tried a variety of bio-meds. Many different biomedical approaches; some have actually had adverse effects, while others have had none at all. I’ve never felt comfortable enough in what I’m doing with the biomedical approach to do it for very long.
Like so many other parents, I’ve grown weary of knowing Sam has a system which is unique from that of most of us. I know he has underlying medical issues and sensitivities. I’ve grown frustrated with mainstream medical doctors looking at me as though I have two heads when I try to discuss it with them. It disgusts me even more when they patronize me and tell me they will at least order the testing and the labs only to never hear from them again.
It’s exhausting trying to educate each of them one by one; doctors, nurses, teachers, aides, principals, relatives, neighbors, clerks, etc….about autism. I wish there were an easier way. I wish we could educate the masses.
I guess you could say there is A LOT I’d like to change about the realities of autism. It angers me that they’ve neglected to take autism seriously, to the point that is currently an epidemic! It infuriates me that so many of our children are now adults or nearing adulthood with nowhere to go and very little in the way of a support system. I am sickened to think of how their parents must feel. I am nearly consumed with grief when I think of how many parents have traveled this same journey before us, only to have their concerns fall on deaf ears, or worse…
I try to turn my anger into productivity. I am very proactive when it comes to my son and autism. I was appalled to discover how little was known about autism, how little funding has been allocated to autism and that, at the time, one in 166 children had autism. One in 166 is now one in 150. I fight for Sam’s rights and the rights of all the others on a regular basis.
Currently, Sam is in the first grade with a one on one aide, his “helper”, as he lovingly refers to her. With the extra help and attention he requires, that his autism requires, he is holding his own, keeping up with his peers and even learning to read. He is happy and well adjusted. He loves and he is loved, by many! That alone speaks volumes of his progress.
In looking back, knowing what I know now, I can honestly say the only thing I’d do differently is the vaccines. Do I know conclusively that vaccines caused my son’s autism? No, I do not. Do I think it is a possibility? Absolutely, I do! A very real and distinct possibility. What I’d like to have is to have been given the opportunity to decide for myself which vaccines were necessary and which carried entirely too much risk.
I’d like to have not been made to feel as though I had to choose between the flu shot and my job while I was carrying my son, after trying to refuse it not only once, but twice! I’d like to have been given a choice and a say in the matter. I’d like for the hospital to have felt as I do that an entire month before due date seems awfully early for babies’ first immunizations. I’d like to have at least been given the peace of mind in knowing that his autism was not caused by vaccines, because I would have opted to wait and see before allowing him to be vaccinated. Or even better, I’d like to have afforded my son NO autism because I refused to trust the status quo.
I can’t say what the future holds for my little Sam Wessels. I do know that I am going to leave no stone unturned, I am not going to accept no for an answer when it comes to helping him or finding answers, and I AM going to keep fighting the good fight for him and all the others like him!
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