The Silent Anniversary

SHARED BY CARRIE A.

As I write this, it has been ten years—almost to the day—since our son Ted was diagnosed with autism. This is my husband’s and my story of the perpetual trench that this has brought our family, and how we have gotten through it.

A Happy, Healthy Beginning

Of our two children, if you were to guess which one would have greater needs based on their birth and their habits and demeanor as a baby, it would not have been our son. It would certainly have been our daughter. I spiked a 103-degree fever during her delivery, and we were given two hours before an emergency caesarean section would be needed. As it were, the physician needed to use the vacuum extractor to get her out. Some of our daughter’s white blood cells came back a bit "off," so she spent time in the NICU for a day or two. And for the first year and a half, she only slept when next to us in bed, waking every two hours to nurse. She was a fussy, irritable baby who had her own agenda—extremely independent in many ways. She hated the bottle and naps, too. Yet here she is today, at 15 ½ years old, with her primary health challenges being ADD and anxiety—nothing else. 

Our son, Ted, came into the world large (9 pounds, 13 ounces) and fast. He was, and is, a very calm and laid-back boy. And for the first eighteen months, things progressed as you would expect. He crawled then walked, right about on schedule, and he started talking and babbling up a storm. Ted loved people, he loved to be held, and he loved Dr. Seuss books (and still does). He ate from a bottle, started table food at five months, and ate with gusto. Ted was a perfectly happy, neuro-typical boy.

Until he wasn’t.

Questions in Need of Answers

Around eighteen months of age, Ted got this glassy look in his eyes, and he stopped talking and babbling completely. It was almost like a light went off in his head, and all of the spark and developing joy that had been there went out.

What to do? Wait it out? Chalk it up to “maybe he’s just a bit later than some other kids?” No. No, we couldn’t go that route—the passive route. What good would that do? No, we had to try and get some answers. And that, in and of itself, was a journey.

First, there was getting him into relatively intensive, multiple-sessions-per-week speech therapy provided through the state’s Early Intervention program. Yet, we still wanted to know the "why." Why was Ted like this all of a sudden? What did he have, could it be codified, and how best could he be treated?

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After being told initially by a practitioner that Ted was “too social” to have autism, we were informed he had something called Sensory Integration Dysfunction. In a nutshell, we were told that he just had a harder time regulating himself and the various sensory stimulations around him. He might need a lot of deep pressure and “squeezes” to help regulate things, but that was about it. Now, admittedly, Ted has always been sensory seeking, and he still to this day, at age 13, likes big squeezes, pillow squishes, and tight hugs. But Sensory Integration Dysfunction wasn’t the answer—as the months wore on, he still was not improving his eye contact or his babbling and speech.

When Ted was just shy of three years old, we were referred to a clinician at Alexian Brothers who came recommended for effective diagnosis of what was looking to be, formally, autism. Ted was put through a battery of observational tests, and we answered questionnaires. And at the end, we were called in to consult with the practitioner on the results.

I don’t remember much of that meeting clearly, except for a few phrases and moments:

  • "Your son is very cute.”
  • “I think we have enough at this point for a diagnosis of autism.”
  • General weeping amongst me and my husband, as we asked for guidance on next steps.

My husband and I allowed ourselves a grieving period. It was about three months or so. During this time, we mourned the loss of “normal.”

After soldiering through those first few months, we started to fight. We got through Christmas, and by January, we were in attack mode for insurance companies. Back then, there were limits on how much insurance would pay for speech therapy. For a kid who can’t talk, how is roughly six months' worth of visits going to help? Same with occupational therapy.

Our oldest would spend the next three years traveling 45 minutes one way for a 45-minute speech therapy session, then drive an hour home (it was rush hour, you know). I gave up a career to stay home to get Ted as far as we could. I spent so many hours fighting to get things covered, paying out of pocket when we could. It was like beating your head against a brick wall. That was a hard trench. (While Illinois does many things incorrectly for special needs children, passing the coverage mandates helped take away one barrier that was ridiculously frustrating.)

Memories from the Trench

1. Having “friends” turn their back on us after Ted was diagnosed.

This one hurt. No one came out and said it verbally, in so many words, of course. They were too polite for that. But it was pretty plain to see when I would reach out for playdates with friends at the time: a few of them would either make up excuses or just wouldn’t respond. In their minds, ours was the “weird” kid who didn’t really know how to play alongside his peers and who would have screeching meltdowns at times.

  • The silver lining to this has been close and dear friends like Jen and Tim, Mike and Julia, and many other long-term friends.
  • We eventually found a group of friends who accepted Ted for who he is, but that was almost two years after his diagnosis. It was a rather lonely time for us here. They have very much become like family to us and helped us through my biggest trench to date.

2. Sabotaging Ted’s environment here at home.

One of the biggest trenches we faced was in forcing Ted to use some form of communication to ask for things he wanted around the house. Mind you, it didn’t have to be verbal. For instance, if he wanted a cup for a drink, he could hand us a picture of a cup (something called PECS, or Picture Exchange Communication System). But—and this important—we put things intentionally out of his reach, precisely to force him to ask and make his needs known. Yes, it would have been much easier to keep things in easy reach for him, but this wouldn’t have forced him to work at his communication at an early age. Communication was/is important to us. Whether he spoke, signed, or used assistive tech, we didn’t care. Being able to state his wants and needs—that was the important part.

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3. Fighting the school system.

Now keep in mind, Ted is overall in a very, very good school situation. He has had supportive teachers who generally know what they’re doing and who care about him. Yet, there have been times—last autumn most especially—where we have had to fight, and fight hard, for the support that Ted needs in a classroom. Yes, we understand that you cannot completely customize a classroom demographic makeup for one student. But being the highest functioning pupil by a large margin last year wasn’t doing Ted any service, either. After a four-hour Individualized Education Plan (IEP) meeting and a free consult with a special education attorney, not to mention banging out numerous detailed observations to build our case—the classroom approach was altered, not only for Ted’s benefit, but also for the rest of the student base.

4. Parental health setbacks.

Both Steve and I have had mental health issues, but those are different trenches for different days.

5.  Finances.

A different trench for another day.  Dave Ramsey to the rescue.

The Journey Ahead

Here in the present day, with Ted in 7th grade, we have been told my numerous people knowledgeable of autism that Ted has a pretty good chance at having a reasonably normal life. We hope and pray that he will be able to live at least in a group home setting and have a job that suits him well—and that he won’t have to live with us for the rest of his life. Ted has many, many good qualities. He is very bright and has a strong aptitude for technology. He is very lovable and affectionate, and he has become quite adaptable to new situations.

But of course, we cannot see that far, and we don’t really know for sure.

As such, ours is a journey that continues. It is a trench that we’ve not fully climbed out of, in a sense, and I’m not sure if we every truly will. Rather, it’s more of a “this is the new normal” kind of a trench. It isn’t easy, and it never ends, really. Ted and his needs are a full-time job, and it’s only within the last year that I myself have been able to return to being gainfully employed. Yet, by the grace of God, with the support of a tight network of true, close friends and family, and by my husband and I being on the same page about 95% of the time, we not only just “get through,” but we survive—and thrive.

This post was originally shared on November 10, 2016.

 
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