How did you know?

Lately, I feel like the most common question I’m asked when I share the twins’ diagnosis with someone is “how did you know?”

Full transparency? I didn’t. Neither Steph or I did.

Yes, when family members came to visit, they consistently be asking the boys “when are you going to talk to me”, and we just chalked up their speech delay to the fact that some boys take longer to talk than girls, and that they were twins, so they must have their own twin language.

It wasn’t until we were on vacation with friends just before the boys turned 2, that someone saying something about it finally started to stick. A good friend who’s worked with infants and toddlers for over a decade, questioned if we were going to get them tested/observed while watching how Luca played by himself in a corner as the other kids ran around chaotically playing together.

I can remember the strange juxtaposition it put my heart in, as her question both pissed me off (feeling like she was outwardly judging my parenting) but also gave me pause that maybe I should be more concerned. She wasn’t one of my younger siblings who lacked any authority in raising littles, or a random stranger that barely knew my kids. She was an active “auntie” in their lives, who had significant experience working with kids their age, and particularly sets of multiples.

When she left that afternoon, my wife and I compared notes, and shared in our frustration, never admitting to ourselves or each other that maybe we were missing something. The following week, at their 2 year-old check-up, the reality set in when I could barely fill out the age-screening paperwork noting their milestones, asking you to stop after you had said no to 3 in a row. I think I stopped at question 5 out of 20, and realized that I was in for a tough conversation with their pediatrician.

Their doctor set them up for a screening with the state, which meant further observations and scrutiny of our boys. We felt like we were answering the same questions, over and over again, only to meet the same concerned pity glances from each practitioner, that I know understand to be the “yes, this one’s a classic case, and this parent is so naive she has no idea what she’s in for.”

Even after the initial screening at age 2, where we were then granted assistance from the state to have ABA Therapists work with us within the home, I was in complete denial. How dare these people think that I have a lifestyle where once a week, I can drop everything I’m doing, to have two strangers come into our home and try to “fix” our kids.

OOF. That hurt to just publicly admit. But I’ve recently learned that I need to work to work through what makes me uncomfortable, so I’m going to say it again. My exact thought process when I was told by professionals that my children needed more help than what they were getting, and that the state was going to offer free, professional help, that would come to our home- where our boys felt safe and protected - to work with them WEEKLY to get them the tools they needed to be successful in this world - was how it was going to effect MY schedule. How selfish is that?

I look back now and hang my head in shame at how frequently I’d tell the ABA therapists at the last minute that I couldn’t go into work late that day, or ask to move the appointment only to cancel it. I know, for sure, that I had to be one of the parents that fell into the PITA category for the incredible humans who were working their tale feathers off just trying to help us, because I was still in the dark about what was going on.

How did I know? Plain and simple. I didn’t. I was ignorant. I was unaware. I was avoiding the situation because it made me feel like if it was my reality it meant that I was a failure as a parent. I was so concerned with not giving up my life outside being a parent, that I was completely ignoring that my kids needed help. They were happy and loved, and although raising twins was hard work, I was under the simple impression that our love was enough to give them anything they needed.

I was VERY wrong.

I was simply unaware.

I truly did not know.

They were little. They were boys. They were twins. There were so many excuses I could find that I chose to ignore what everyone else could see, but we couldn’t because we were in the middle of the chaos of it. The only thing that stood out to us as concerning was that Luca could not sit still in his high chair, as he would rock back and forth, almost without intention. We could see that it calmed him, and when we asked the pediatrician about it, they said that it could have to do with the acid reflux he had as a baby, but it was completely typical and to not worry about it, as many kids liked to move around in their chairs. As for Jack, the only thing that was glaringly obvious, was that he had my “flare for drama”, and it tended to intensify around transitions. His big feelings were far bigger than any 2 year-old could handle, but we just thought that was age appropriate.

At age 3, however, we received a gift that I don’t know if we’ll ever be able to repay. As the boys had both received an official diagnosis, the state approved their attendance in a day program at an incredible school, two minutes from our house. The twins were assigned a team of people, including two individual aids that would be with them at all times, and a plan designed just for their needs, called an Individualize Education Plan, or IEP.

The school performed their own evaluations over the summer, and during the last few weeks of August, I was able to meet with their team that included administrators, teachers, speech therapists, ABA’s, and a physical therapist to work with their gross and fine motor skills. Each talked to me with such kindness as I processed how much help they believed the twins needed. My daughter slept in my lap as I hugged her for comfort, bravely trying to fight back tears. This room of women barely knew me, and the last thing I needed them to see was how scared I truly was.

As we worked our way through each twin’s IEP, and I sat in that uncomfortable conversation, I started to pick-up on something that has been key in my ability to show up as a present parent for all three of my children. These women, all incredible in their own right - truly angelic and patient and just wonderful- was there with me to do their job. Their job was to get our boys up to speed, using the resources they knew would help them, through the proven processes and practice they’d used with thousands of students before my children. They knew what I didn’t. And all I could do in that moment was to lean in, and realize that my job, as the parent, was to show up, every day, and continue to be the twins’ advocate, support, and unconditional love. It wasn’t my fault that I didn’t know what the teachers did. I had spent my career in fundraising. I could sit in front of someone who had more money than I could ever dream of, and ask them to make a six-figure gift without a worry in my head, but this terrified me. So we remained grateful for the opportunity to send them to school each day with these professionals who impressed and comforted us, and gave us faith that we could do this together.

Fast track two years later, and as we raise a 19-month old daughter, reaching the age where others were noticing what we were missing in our twins, we are faced with a daily awareness of how much we didn’t know how about raising toddlers.

Alli asks to eat with a spoon, and have milk in her cereal. Things the boys still refuse to do. (I will say, however, ice cream for the twins is a total different story.) Maybe it’s the texture for them, maybe it’s the mess of it, but they want nothing to do with cereal and milk- even at age 4. By 1-and-a-half, Alli needed to be having what we as adults were eating for breakfast.

We constantly wonder if we would have been more aware, or more present in understanding and accepting what friends and family were telling us, had Alex been the oldest sibling, but the truth is, we’ll just never know. And that’s ok. Because as parents, as long as you lead with love and your children’s best interest at heart, you are doing you job.

My advice for others finding themselves in a similar circumstance, is to not let the concerns or advice come across as we did at first, assuming the inflictions meant we were failing as parents. That clearly we weren’t paying enough attention to our kids, or had any clue how to parent, if we couldn’t get our kids to eat cereal with milk in a bowl with a spoon by 18 months old. We had never met autism before, so we didn’t know how to recognize it, assess it, or even work with it.

Now we do. Or at least learn more and more each day in order to.

And hopefully, as I continue to share our story, maybe it will help another parent or care taker not loose the time we did while they were so young.

The collateral beauty of a diagnosis is that there are resources out there to help your family, both your child in need, but also you as the care giver. They come with incredible human beings who also have your children’s best interests at heart. What I wouldn’t give to get back that first year with the two talented ABA therapists who were willing to come into our home and work with us, and to apologize for not seeing it, or being more present.

Time is the one thing we can never get back. So make the most of it while you have it.