Amazing Love

Having a child on the spectrum is, on its easiest days, a challenge.

I still pray every night for Eli to be healed and for him to be relieved from the struggles and challenges that he faces every day. On those days when I allow fear to grip me or sadness to take over, I plead with God to help my baby. And then there are the days when I feel I can’t help at all, and I go to sleep, heart-broken, wishing I could relieve him from the stress he faces.

However, in the middle of all of this, of the day-to-day routine, there is something so sweet and explainable about it all.

Besides praying for healing, I have started to pray that if God chooses to allow Eli to walk this path, that He bless him with the tools he will need to cope with a world not made for him. I pray that God gives him strength and confidence, and that as his mother; I can instill an undefeatable self-worth into his life. I pray that God helps our family grow to be the best support system we can be, and that Jason and I can be best parents we can be. I pray for guidance in the choices we face, and for Eli to be surrounded by people who will encourage him and advocate on his behalf.

Baby Joseph is one and growing by leaps and bounds every day. He is hitting every milestone (as parents of a child with autism, we are milestone experts!). I find myself relishing every word spoken, every long gaze. Today I held him and just soaked in the eye contact as he drifted to sleep.

I took so much for granted with Adam; while I enjoyed the newness of each first laugh, step, and word, I was so in a hurry to move to the next phase. Having a child with autism has taught me to enjoy the moment and appreciate the little things, to slow done and savor, not to be in a hurry to see my babies grow up.

Eli has always had a way of showing us affection, whether it was a smile, a squeeze, or, my favorite, leaning his head on your arm as he eats dinner beside you. His precious little personality exudes love. But even with all this affection, it was only a short time ago – at age four – that those three little words came out: “I love you!” Amazing! I know of others who have yet to hear those words and my heart breaks for them. Having a child with autism has taught me that sometimes the littlest words or actions mean the most. Hearing your child say “I love you”, is one of those moments, and I hope to never take these words for granted, not from Eli, or from any of my children

I recently read a blog title that warned, “Don’t tell me my child’s autism is a gift.” No, autism most definitely is not a gift; the gift is to see the beauty, grace, and love in spite of it.

Christmas Miracle

Christmas is my favorite time of the year and I always feel a bit sad to see it go. This year, however, I am finding it a bit more difficult to let go of the season. This Christmas offered a lot of wonderful firsts for our family. Joseph saw his first Disney Christmas this year; I love seeing his eyes light up at each and every twinkling light he sees! Adam was very involved in making cookies and crafts, which is something I have dreamed of doing with my children since before they were born. But one of the more extraordinary blessings this year came to us from little Eli.

Last year, at the age of three, Eli showed no interest in any lights or decorations as Adam had at that age. We would take trips around the neighborhood to look at lights and, while Adam pointed excitedly at every display he saw, Eli was only very involved in inspecting the toy he had in his car seat. When we decorated the tree that year Eli preferred to play with toys in the room and he had to be coaxed into placing just one ornament on the tree for the sake of a photo. As I relished every Christmas tradition and moment with Adam, a small piece of my heart cried for what I would never experience with Eli. That year Christmas happened around him.

This year, as the Christmas season began to come upon us, I embraced what was sure to be the wonder and joy of Adam and Joseph and resigned myself to including Eli as much as he would allow. Was I in for a big surprise!

It came one night during our weekly search for Christmas lights. Our neighborhood begins to decorate in late November, so I decided to swing by a few houses after Thanksgiving that are usually decorated early in the season, As I approached the first house I pointed and yelled, ”Look! Christmas lights!” Adam squealed from the back, Joseph strained to see from his car seat, and I was surprised to see Eli actually looking out the window. We passed a few houses that night and Eli seemed very interested.

Then it happened: one night as we were driving home, I saw a nicely decorated house and pointed it out to the boys. Adam called back excitedly, “Christmas lights!”, and rather unexpectedly Eli literally screamed out the words “Christmas lights!” I looked to see him smiling and pointing at the display.

From that moment on, no display would escape Eli’s sight, and no ear was safe from the screaming pronouncement “Christmas lights!”  if that were not enough, at Walmart he became obsessed with the Christmas department, though, unfortunately, his favorite item was an inflatable Santa in an outhouse. He loved that display so much I honestly considered purchasing it. Thankfully, my husband was there to talk some sense into me by reminding me that we did not need Santa’s outhouse on our lawn..

One day, Eli came running into the living room and hollered, “Christmas tree right there!”, and pointed at an empty space by the wall. The next day we bought a tree and Eli helped Adam decorate it until the last ornament was hung.

Even more so than pointing out Christmas lights, were Eli’s obsession with Charlie Brown Christmas, both the book and the movie. One day in the car, out of nowhere, he began to sing ‘Hark the Harold Angels’.one of many Christmas songs he learned this year.

Last year I had cried over the fact he could not participate in the church Christmas program, but this year he was a shepherd.

Christmas is about the love and hope that came down from heaven in the form of a tiny baby that would save all mankind. I could not help think that this was God once again, sending me his hope and his love in the form of a little child. A child who last year could not say more than ten words, but this year sang along with several Christmas songs. A child whose future at times seems so unsure, but who was teaching me to have faith, faith in not what I see, not what doctors tell me, but faith in a God who is so much bigger than my small understanding of things. Faith and trust!

This was my Christmas miracle. It was more precious than any gift I could receive. It came in the sound of my little Eli wishing everyone he met “Merry Christmas!”.

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.