I’m in the Special Needs Mom Club

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I’m part of a club that I never planned to belong.

I’m in the special-needs mom club.

I’m a planner by nature. Growing up in a middle class, suburban neighborhood with two happily married parents and a younger brother, I had my future planned: earning a bachelor’s degree after four fun years at college, marrying the love of my life, working until we decided to have our three children, and transitioning to a stay-at-home mom. I had it all figured out.

Everything was going according to plan. Degree, happy marriage, fulfilling job-check. In 2009, I moved to the next step of my life plan: motherhood. My daughter was born, and though she was slightly premature (fun fact: my labor started at my baby shower!), she developed beautifully and was the easiest baby. I remember having to WAKE HER around 10:30 am every morning because I couldn’t wait to see her, but she was still sleeping. I remember thinking, “THIS is motherhood? Bring it on.” When she was nine months old, my husband and I decided to add another baby to our family.

In 2010, my son was born. These two children and their dad were my world and I was ready to embrace juggling my time and attention between these two babies. Until I noticed things were different. 

My son never slept. Ever. He spit up constantly and was fussy beyond belief. When he was about six weeks old, I had to get away because I was ready to lose my mind. My parents generously babysat and my very fit mom had SORE ABS from being jerked awake when he woke up crying every thirty minutes. I kept telling myself that he would outgrow it. We were constantly at the doctor. Was it colic? Acid reflux? Ear infections? I was desperate to “fix it”. 

The weeks turned into months, then years. We noticed gross motor delays. In my frantic effort to help him, I begged our doctor to let First Steps intervene. At 15 months old, he qualified and started therapy. I was assured by the time he was three he would “be fine” and start preschool.

But then he turned three and was nowhere near an age-appropriate developmental level. His gross motor delays evolved into speech, fine motor, and social delays. We enrolled him in a developmental preschool. Around the same time, I gave birth to my third child, another son. I wasn’t letting my dream of the family I had imagined get stolen away from me. I was juggling a 4 ½-year-old, our three-year-old, and our newborn. I was stressed. I was tired. I was drowning. 

I began to withdraw from life, including my family and closest friends. My friends and I had weekly playdates with our bright-eyed, beautiful babies. But my son wouldn’t play.  Couldn’t speak. Would gag and heave up his lunch if he didn’t recognize the taste. Eventually, every gathering ended with me sobbing out of frustration and sadness. I would leave embarrassed being “that friend” that was needy and brought everyone down. 

In 2013, we added a new developmental pediatrician to our growing list of health care providers. My son was having a particularly hard time during the appointment, and the doctor looked me in the eye and said, “Your son definitely has autism”. I was alone, telling my husband to not miss work as I was expecting this to be a quick follow up appointment. I was in disbelief, even though I wasn’t. He handed me a red folder with reading materials and walked out. I held it together until I reached the parking lot where I sobbed uncontrollably.

We realized developmental preschool wasn’t working for my son. He began one-on-one therapy that has been amazing for him. We started diets, supplements, and anything else our doctors would support. He turned 10 in September and recently transitioned into a special education program. He has come so far. And I’m so thankful. But it’s still hard.

It’s still overwhelming for me to think about anything past today. It’s hard to answer honest questions from my typically developing children about why he struggles and who will “babysit” him when he’s a grown-up. But his laugh is magical and fills my heart with so much joy and somehow makes me temporarily forget all of that.

My emotions with autism are still raw. I have joyful days and days where I hide tears behind my sunglasses. I get angry at autism, then thankful for the lessons it teaches my family. I celebrate the smallest victories. I’ve experienced kindness from strangers and met incredible people along the way. I am humbled. Even though I’m now part of a club I never planned to join, I’m learning to accept my membership card as I know this sweet boy was always meant to be mine.

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