Our Story

My husband and I found out that we were pregnant with our first child in April of 2013.  Aside from being cranky and uncomfortable, my pregnancy went smoothly, with ultrasounds and checkups indicating that we would be having a healthy, “active” child (getting a read on a heartbeat was nearly impossible starting around 30 weeks, as the stethoscope would repeatedly be kicked off of my belly).  I went into labor the night of December 20th while watching The Vampire Diaries reruns for the billionth time (don’t judge).  Active labor lasted a very intense, drug-free 10 hours (I was ALL for an epidural, but due to a spinal operation I had in 2000 the doctor didn’t want to risk it).

When Alexander was born the morning of December 21st, he was immediately rushed away by two nurses.  After waiting for what felt like forever, a doctor came in to tell my husband and me, “Your baby is sort of okay” (I will forever wonder how someone with that kind of bedside manner made it through medical school).  We were then told that Alex had not only aspirated meconium (aka baby poo) and was not breathing on his own, but that he was also having continuous seizures.  Seeing my newborn son covered with wires and stuck with tubes and not being able to hold him was gutwrenching and remains to be the worst moment I have had as a mom.

Alex was soon taken by ambulance to a NICU in Chicago, with my husband and my dad going with him for the night while I stayed in my hospital room.  The nurses pumped me full of anti-anxiety medication, for which I will be forever grateful, and I escaped to my dreams where I wasn’t apart from my baby.

One day later, the hospital agreed to discharge me a day early and I drove with my mom and brother to Chicago.  Alex was being consistently given phenobarbitol, an antiseizure medication, so was sleeping or drowsy 24/7 but also was not having seizures, so gratefully could be held.  Getting to finally hold my baby boy was one of the best moments of my life.

IMG_0468After five days of running tests, the doctors told us that the cause for Alex’s seizures was uncertain, but that he had a subdural hematoma (i.e., a brain bleed) that was slowly diminishing in size.  Since the phenobarbitol had been effective in keeping the seizure activity at bay, we were able to bring Alex home with us the day after Christmas (cue another contender for best day ever).

Since bringing Alex home from the hospital, we have not witnessed a single seizure, and the hematoma resolved on its own (we weaned Alex off of the medication at 1 year old–we never did get any definitive answers regarding the cause for the seizures).  When Alex began opening his eyes more and making eye contact with us shortly after bringing him home, I was so grateful that my baby boy was okay.  My husband and I did not take a single milestone for granted.  The first social smiles at 6 weeks; first rolling over at 3.5 mos; his first steps at 11 mos. and full on running at 13 mos– Alex hit milestone after milestone on time or even a bit early.  After spending the first week of Alex’s life wondering if he would ever be able to do any of these things, all we felt was lucky.

At around 18 mos., Alex’s speech development started to lag a bit behind the developmental milestones that kept popping up in my email inbox.  I mentioned my mild concern to a friend and speech therapist, who asked me a few questions and then suggested I wait 6 months or so before looking into a possible referral for evaluation.  Shortly thereafter, Alex seemed to be making more gains in his speech, and I soon forgot all about my worry when we discovered we were pregnant with our daughter, Clara.

Right around the time when Clara was born in early April of 2016, Alex’s personality seemed to change over night.  Our perpetually happy little boy suddenly started throwing tantrums, which we had been lucky enough to avoid almost completely until that point.   Alex had always been “stubborn” about looking at us when we called him, but he began making eye contact with us less and less.  Alex also began speaking less, often leaving the room when we asked him a question.  I thought for sure it was because of the new baby, which parents and internet forums everywhere will tell you is a perfectly normal occurrence in families with toddlers and newborns.  It was nearly three months later, when we took Alex to a friend’s 2-year-old daughter’s birthday party, that I realized that something else was wrong.  Next to several of his peers, I suddenly saw all of the things that I had been ignoring or simply not seeing.

By the time we left the party a couple of hours later, I was in a panic.  Even as I called the district’s Early Intervention program, I was only able to wrap my mind around a definite speech delay, and nothing more.  I began asking friends for reassurance (“Alex doesn’t have autism, right??”).  When the EI service coordinator came to our home to do an initial intake, I found myself repeatedly saying “I know he doesn’t have autism, but…” as the coordinator asked question after question that I recognized  from the autism screening tool that I had given to other parents so many times.  After watching Alex for awhile, she tentatively asked if we would be comfortable with Alex’s social skills being evaluated along with his speech.  By the time the coordinator left, I knew.  After about a week of crying many, many tears and sleeping very, very little, I called the service coordinator and asked her to please add an autism measure to Alex’s evaluation.  She breathed an audible sigh of relief and said, “I am so glad to hear you say that.  Let’s get services rolling as soon as possible.”  Clearly biting her tongue until this point, she began telling me about all of the possible routes we could take for medical diagnosis and how to get things moving the quickest.

The assessments performed by a special education teacher and a speech therapist confirmed what, by this point, my husband and I both already knew.  Though the Early Intervention program does not give medical diagnoses, the therapists and service coordinator were all in agreement that it was highly likely that Alex was on the spectrum, and that we should pursue a medical diagnosis as soon as possible.  They wrote in their evaluation report that Alex would need speech, special education, and occupational therapy services, and with that began our family’s journey into the world of Autism Spectrum Disorder.

Please check in from time to time for updates, rants, and ramblings, and feel free to leave a comment or any words of encouragement…they go a long, long way!

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