“When we found out we were pregnant, we started to imagine their futures. We started to think about what could be for them one day.
When we picked out their names, we looked to reflect a path we hoped would be possible — providing them strong, dependable, serious, and relatable names.
When we pictured what their paths may look like, we thought about this close bond they’d have as twins. They’d grow up always having each other — a partner in crime, a shoulder to lean on, someone who would always have their back.
When we navigated those sleepless nights of newborn twins, juggling breastfeeding and pumping, diaper changes and tight swaddles, we told ourselves… this too shall pass.
When they rolled over for the first time, we thought, ‘A milestone! We hit a milestone!’ And we anticipated so many more milestones to come.
When we talked about their futures, we gushed over the endless potential sports they would play, the potential jobs they would have, whether or not they’d want to go to college or just jump into learning about the family business. We promised each other we’d support whatever dreams they might have.
When the boys were diagnosed with autism at 18 months, we were in denial. We thought their speech was delayed because they were twins without older siblings and had never been in daycare. When doctors said they weren’t sure Luca would ever talk, we responded with determined disbelief the experts had no idea what they were talking about.
When the boys hit age two, and we started to really learn about what autism would mean for our family, we started to understand how severely unknown our road ahead was. And all those assumptions of hopes and dreams we had for our boys shifted.
When the sleepless nights returned, on top of bringing another newborn in our house, we started to wonder if we’d ever sleep again.
But then, something clicked…
When we learned about the magic of autism, we dropped the self-pity and the potential doom autism could mean for our children, and focused on what the incredible road yet to be paved would look like.
When they started to make significant progress in school, finding words we weren’t sure we’d ever hear out of their mouths, we leaned in hard to asking for help, being open to whatever autism may bring, and researching wherever we could to learn about how to be the parents they needed.
When Jack went to his first birthday party of a classmate, played with friends, and even sat down to sing before cake, we began to see glimpses of that life we thought may be ahead for our boys, both despite autism, but also because of it.
When COVID hit, and they took away the routine and resources the twins received from their school, we thought it might be temporary, but stayed open-minded to our ability to show up for them.
When the weeks passed, and the sleepless nights outnumbered the ones with sleep in them, our tired bodies began juggling the chaos and anxiety the pandemic left on our family. We began to have a hard time keeping perspective that the regression happening before our eyes with the twins wouldn’t be permanent.
I reached out to their academic team, and then the administration above them, as well as the Superintendent, begging to know what plan lay ahead this summer. When only the students who were in serious need, like our twins, would be in the school district, limiting exposure for the virus with plenty of resources to get our twins back on track. We found very little perspective left to focus on, as their optimistic promises to put a plan in place continued to fall flat.
When we learned, just last week, the summer school their medical diagnosis and assessments of their incredible academic team assigned them, would be limited to hourly increments daily, we started to feel defeated. When we look at the magic in their autism now, we see it being buried by their anxiety, need for routine, longing for their peers, and regression that has shown to potentially have permanent damage.
When we look ahead to their future, we worry the lack of what we can provide for them right now, during however long this pandemic keeps them out of school, will seriously affect who they could be, the life they could live, and the choices they will have when the time comes — forget what sports they will play, if they will want to go to college, or what jobs they may want.
The special ‘when’ for children with special needs is being ignored with the severity of everything going on in the country right now. And although it may fall low on the priority list for so many of the talented decision makers out there who could do something, it remains at the top of our priority list as their parents.
So I ask you, WHEN will the medical diagnosis outlining what our children need be enough to get them back on track, so their many special whens of the future can remain bright, full of hope and possibility?
This story was submitted to Love What Matters by Christina Young. You can follow their journey on Instagram and their website. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more stories from Christina here:
‘Last night we learned of the death of a toddler his age as we watched the news. Emergency rooms aren’t filled with kids like him.’: Mom of special needs child says ‘the least I can do is keep my family out of your care’
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