“You blew it.”

Can you imagine that moment, as a first-time parent, hearing those words from your child’s pediatrician after expressing your exhaustion and frustration with your child’s unwavering inability to sleep? My son, Jordan, had sleep issues from the get go, never sleeping for more than a couple hours at a time. We tried every method under the sun including the cry-it-out method that our pediatrician fervently pushed for at each appointment, but apparently we failed in this former pediatrician’s eyes because my son’s sleep problems were not resolved and somehow that failure was our fault. Let it be known that that was the last appointment we had with that doctor, and Jordan’s sleep issues still carry on today which we’ve found is common with autism, only except for waking with shrill screams and cries like back then, he now has adjusted to silently coming to our bed, and then every few hours, waking and burrowing, fidgeting, squirming against our bodies until he drifts back off to sleep.

Jordan, partly due to his happy, playful nature, was not diagnosed with ASD as early as some. He was meeting his milestones with flying colors (walking at 9 months, could recognize his ABCs, count to 20, identify colors and shapes at age 2) so while there were some things that stuck out to us, such as his sleep issues, they were minor compared to what one would expect as a typical red flag, and so he kind of flew under the radar.

As he grew older, his differences became a little more apparent—he was the only kid in daycare who could not sleep during naptime, so he had to have a caretaker play with him separately. His elopement behaviors started, beginning with escaping from daycare (yes that happened!) and then several times from his grandpa’s house. The other children his age started to slowly pass him up in speech while his progression seemed to hit a plateau. Then he started lining up his cars on the edge of the table. We decided to seek out an assessment and received his ASD diagnosis right before he turned 4.

Fast forward to present time, Jordan is now about to turn 5 in a couple months. He has been in ABA therapy for 7 months and is also currently in SPED preschool. His major struggles are due to his OCD tendencies and his need to stick to a routine, and if you stray from his expectations you can expect an epic meltdown. Going out to eat or taking Jordan and his brother to the mall is a gamble but we do it because either A. we’re crazy or B. we’re desperate for some feeling of normalcy. Sometimes it goes well (which still doesn’t mean easy), but if Jordan’s mood is not right it can be an epic disaster.

However, despite how challenging life is with Jordan’s resistance to changes, I can’t help but miss his big smile and his infectious laughter when he’s not home. Jordan is so sweet and loving and never fails to give me the best hugs and kisses—affection has never been something he’s been avoidant of. His family of therapists at his ABA center all love when they get to work with Jordan, because he’s just a fun kid. He loves music and loves to dance. I wish I could share videos of him dancing to his favorite Daniel Tiger tunes because it’s impossible to watch without a smile. He also loves to sing the Moana song, “You’re Welcome,” into his toy microphone. He loves to pull his shirt halfway over his head and then run over to the closet door mirror just to see how silly he looks. He loves to run away and have us chase him. He’s recently learned to play tag so lately he’s been going up to any unassuming kid and tapping their shoulder, yelling ‘you’re it!” He loves to climb, jump off the furniture, and do just about anything that will make me tell him “get down.” He’s a typical 5 year old kid, right? Except he’s not.

Without spending enough time with Jordan to witness the epic meltdowns and rigidity to his schedule, if you catch him when things are good, it’s so easy to simply see his adorable playful self. Things are always good until they’re not, and can go from “normal” and peaceful to ultimate chaos in a split second. But despite these challenges we go through, including my moments of defeat, weakness, and episodes of crying alone sometimes in my car, he is and will always be mine. He is wonderful, and he is SO loved. I have no idea what the future holds for him but I have so much hope and expectations, because he is kind, loving, smart, silly, and so much more than his diagnosis. And for me, for today, that is enough.