Autism: Our Journey So Far

Eli was one and a half when we began to notice something different about him.  He did not speak except for high pitch squeals and an occasional “da-da”. In fact, we called him R2D2 because he made the cutest squeaks and squeals.  Whenever we did something out of the normal routine (such as going down a different aisle in the grocery store) he would have a huge meltdown. The meltdowns were major, but we attributed them to his frustration with being unable to communicate. On one occasion, at an aquarium, I noticed Eli physically shaking at the sight of swimming fish, and his hands would move in a funny way. There were other behaviors that would follow, like his obsession with circles; he ran in circles and wanted to touch and step on anything round, especially manhole covers.  All in all, he just seemed like a quirky little guy.

At his two-year old appointment I expressed my concern on his lack of speech to the doctor. After a brief discussion she recommended speech therapy, but then paused and asked me “Does he make eye contact with you?” I was dumbfounded; it was a behavior I really never paid attention to. I stammered a bit, trying to point out instances when Eli did look me in the eye, to which she replied “Let’s start with speech first and go from there”.

Driving home from the doctors, it dawned on me: all those cute little quirks that I loved so much about Eli did not seem like simple little quirks anymore. As a public school teacher, I know enough about children to realize what the doctor was silently implying – autism.  I immediately went home and googled signs of autism.  All signs pointed that way.

My husband and I started Eli with speech therapy and had his hearing tested. After his hearing was found normal in December 2012, we started on our journey with a wonderful neurologist. Our new doctor didn’t rush into a diagnosis, but, rather wanted to take her time observing and testing Eli  because of how young he was, and really take time to examine every aspect of what could be going on.

Fast forward to July 2014: Eli now communicates with some sign language and pointing but he is also beginning to use a few words. Every day that I hear even the slight sound or semblance of a word, it is an amazing and indescribable feeling!  But with this small sign of progress, other signs of autism, like his hand flapping, have become worse.  More than ever, he is unable to tolerate certain sounds or pitches, and he pinches members of our immediate family for reasons we still cannot figure out. Though at times he can be sweet as pie, more and more he exhibits very aggressive behavior.

On July 3rd a team of specialist and doctors sat down with us to discuss what we already knew in our hearts: Eli is on the spectrum. He has level two autism that is moderate to severe and they believe he may have apraxia of speech, unrelated to the autism, that needs further testing.

The diagnosis was not hard to swallow. We love our baby and we had been preparing ourselves for this diagnosis for a while. The most difficult part came when we asked ourselves“ Can we do this?” Are we able to raise a child with autism?  What if we fail? Research proves that Eli’s current age range is the most critical time for intervention, and the specialist suggested to us that he needed 40 hours of applied behavioral analysis therapy a week, two hours of speech therapy, and two hours of occupational therapy; where were we going to find the time to fit in this much-needed therapy? And then there is the finances – the idea of 3-4 co-pays a week made my husband feel sick. Oh and by the way… we have two other babies who need us just as much. The worry and concern was overwhelming. But in spite of all our unknowns, we always had one thought in mind: we have to do this, all of this, , and do it right to give him the best shot in this world..

And that is how our journey began,  with hope, lots of worry, but more than anything, with the strength and love of our Lord Jesus Christ. For me, this is crucial. I have hope because of God. Yes, I get overwhelmed on a weekly basis, but at the end of the day I know with whom my hope is in.

We don’t know what the future holds for our beautiful boy, but we know who holds our future. I take great comfort and peace in that. All we can do is try our best, work like it depends on us, and pray like it depends on God.

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