The Cool Mom.

Last weekend, my wife confirmed for our children, that she is, in fact, the cool mom.

How did she do that? You ask?

She brought home nerf guns.

Let’s back up.

About two years ago, we were Christmas shopping, and she wanted to get the boys nerf guns. My disgust clear across my face, I factually pointed out that all the packages state for 8 years old or older, and that ours weren’t even 1/2 that age, so it would not be in our best interest to gift them to twins whose excitement matched with aggression on a holiday morning would simply mean any fragile decorations I’d put at a height they could not reach, would most definitely find peril.

That shopping trip, I won.

Last weekend, when Jack let Steph cut his hair and trim his nails, earning him a trim to the oh-so-wonderful-Walmart, he pridefully came up the basement stairs yelling “Mommy! Look what Mama let me get!”

She followed behind him grinning, ear to ear, excited to introduce our kids to the amazing battlefield of rush that styrofoam pellets aimed at you at a speed to fast for 5-year-olds should be.

Jack rushed to his siblings, making sure they each got their gun and stash of ammunition, and all three kids followed Mama eagerly to learn what to do.

She walked them through it, and I simply sipped my coffee in the kitchen quietly, watching their eyes follow her ever movement, hanging on her every word in amazement.

The only one to get injured that day was me.

The only one to pick up the hundreds of darts shot, was me.

I am the Mom who cleans up the mess.

I am the Mom who is the target.

I am not the cool Mom, when she puts the darts up high above the kitchen cabinets because she’s tired of cleaning them up.

I am also the mom that at 5am the next morning, when Jack was desperate to play with them again, said, “Mama will be so excited to play with you when she wakes up, so let’s wait for her.”

I could have tried to be cool at 5am. I had been up for an hour, and had a cup of cappuccino- cool was technically possible.

But that’s the thing.

There can’t be two cool moms.

So all week, when they wanted to introduce their friends to this amazing new world Mama gave them, I left it for her. I let her look like the coolest Mama there was.

Because she is pretty cool.

At one point I asked her, after I’d cleaned up the darts for what felt like the 100th time, why on earth she thought this was so cool. (Again, I’m not the cool mom.)

Before I could lecture her on how scary it is to teach our children about guns she stopped me.

“If we had a gun in the house, I’d never get these for them.” she said.

She then pulled the ultimate excuse, that’s impossible to fight. “I never got to have this stuff as a kid. I just want to have fun with them.”

Ugh.

This is why she is the cool mom.

We will continue to have conversations with our children about guns, and ensure they know to never touch a real one… but for now… the cool mom is enjoying teaching them about aiming at a target, and how to breath and relax their bodies to really focus in on what’s in front of them. She is filling our house with laughter and play, and giving the kids memories that are happy and filled with joy.

I’m not really sure I’ll ever be the cool Mom.

I’m the worrier.

The keeper of all information.

The one who knows every teacher, aid, nurse, school administrator, doctor, and adult who works with our children on a regular basis.

The one who knows which twin wants veggie sticks in his lunch, and which one wants cheezeits.

I’m the mom who makes sure the medicine gets taken every night and every morning.

I’m the mom who gets up early every morning for the snuggles on the couch, and holds Jack’s hand while reading him a story as he falls asleep at night.

Not a lot of room left to be cool.

But that’s ok.

Because the cool thing in our family is… they have two moms, so we don’t both have to be cool. I mean, we wouldn’t want to spoil them or anything.

To all the non-cool parents out there: I see you. Kudos on letting your partner bring the fun to the party. I’m with you on clean-up duty… because to us, happy kids and a clean house is cool enough, isn’t it? XO

Mixed Emotions

You know how people are always saying… “it’s with mixed emotions”, and fully aware of what they mean when they say it?

Today I watched first hand what it feels like to have mixed emotions, and try to process it… through the eyes of a five-year-old.

It was the first day of summer school.

This morning I relived that chaos of a hustle trying to get three kids under the age of 5 out the door to be on time for two different drop offs.

Alex needed a lunch.

The boys were confused why they didn’t need a lunch (they are used to 6 hour days).

Jack couldn’t understand why Ms. Nicole couldn’t pick them up on the bus, and spoke with sincere advocacy that he was a big kid who didn’t need me to drop him off.

I couldn’t find Jack’s backpack, but because they only needed masks and a water bottle, it wasn’t a big deal to combine their belongings into one bag, which logically appeased Jack despite that Luca’s name was on said bag.

When I had to wake Luca up, Jack declared with glee “Luca, come down stairs, we get to go to school today!”

Luca did join us in the kitchen shortly after, with a confused smile on his face.

My wife helped get all three kids in the car, and we were 8 minutes earlier to depart than I had hoped/planned.

After we dropped Alli at school, I explained to the boys what would happen, so they could be prepared. I shared that we would pull up to school, right in front of the door, like the bus would have. When we arrived, they would have their foreheads checked to make sure they weren’t sick, and then their new teachers would help walk them into the building.

Jack was excited. Luca, not as excited, started to get weepy eyed. I assured him that Miss K. would be inside and he would be safe (as his amazing teacher was also our nanny during the last few months, so we had scored fortunate familiarity to make this transition easier). It was as we pulled up to school that the tears started flowing.

It caught me off guard because something was different about it. He was clearly happy to be at school, but something was upsetting him.

After the car was in park, I put my mask on, and made my way around to the back of the car to unbuckle their seat belts. Luca came out of his seat willingly, and even let the nurse take his temperature. He said “school” a number of times and you could see the joy and excitement in his eyes.

But then a teacher he has not met, in a mask, asked to escort him in side. He looked at me with those same excited eyes, and fearful tears escaped them. I reassured him Miss K. would be inside, but he stood frozen - the definition of mixed emotions. As he worked to process his choice- to stay with me where he felt safe, but miss out on what he missed so desperately - or to face the fear in the sincere want to return to the classroom, Miss K. appeared in the doorway.

That boy SPRINTED - with feet so fast it was as if the emotions evaporated in thin air- to the friend/teacher he trusted and needed so much. Tears continued to fall with each step he took, but you could see him choose the uncomfortable fear because he knew in that moment what he needed more than to be safe with his Mom.

Jack happily followed behind him, glowing smile from ear to ear.

I spent 60 minutes in the parking lot, listening to “Untamed” by Glennon Doyle, answering emails and getting work done at the same time.

When the hour was up, the boys exited the building, and Luca was still in his mixed emotions. This time, the tears that escaped his eyes were those of happy tears to have returned, but also sad to have to leave so soon.

It was so powerful. Miss K. reassured me he had been present, and working hard in the classroom without tears. Jack couldn’t wait to share the worksheet he proudly carried in both hands, and was simply elated.

One of the things I’ve learned with autism, for all those Big Brother fans out there, is you always must “expect the unexpected”. Despite that the twins have the same diagnosis, almost everything about them is different: the way they act, the way they learn, the way they grow- you name it. It’s almost as if they live life unfiltered - without care or comparison.

While they were in class, and I listened to Doyle’s audio book, she spoke about how at age 10 we learn how to categorize ourselves, and determine how it is we expect to act. I hope my boys learn to live life unfiltered with such muscle memory, that it becomes a strategy, and a tool they use to be true to who they are. Never finding a box to fit in… never learning the embarrassment of judgement from others. I hope that both because of and despite their diagnosis, they continue to live this life untamed, as Glennon titled her novel, as Luca had just as we arrived in that parking lot, feeling every emotion as strongly as when he was asked to leave it.

As we exited the parking lot, I too had mixed emotions.

I have been publicly advocating that our twins need to go back to school, to receive the medically diagnosed assistance deemed necessary by the doctors and administrators from the moment I learned school would not open. My grateful heart was thankful for the little summer school opened, providing an hour a day three times a week, but still felt that the 6 hours 4 times a week their IEP stated explained this wasn’t enough.

Today, however, after watching Luca work through his mourning of the school time he had lost, and his joy to be returning, my grateful heart is merely that. I am thankful for today, and for the time they will be in the classroom. I am hopeful that sharing our story will continue to open hearts and minds to understand why children like ours, both those with special needs and those who are gifted, are among a smaller population who need the classroom more than others. I will continue to advocate on their behalf, because I know in my heart they need it to erase the regressions we’ve witnessed over the last 6 months.

But today, with mixed emotions, my heart is smiling and grateful for these boys, and for their ability to be in school at all.

The Special When

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 that 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 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 that 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 how 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 the incredible road that had 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 researched 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. 

When I reached out to their academic team, and then the administration above them, as well as the Super Intendant 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, that 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 that the lack of what we can provide for them right now, during however long this pandemic keeps them out of school, will seriously effect 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 that outlines what our children need be enough to get them back on track, so that their many special whens of the future can remain bright, full of hope and possibility.

When?

What do you need?

“What do you need?”

The question is banging at the door I’ve closed in my mind as I lock myself away in my mental closet of a pity party, sitting on the cold dark floor, letting the tears continue to fall.

“What do you need?” It demands from me.

Like my four-year-olds, I sit in the time-out crying, ashamed, and unable to find the words. 

“I don’t know!” I want to shout back. “Don’t you think if I knew, I’d know how to ask for it? Or better yet, get it for myself? I’m fully capable.”

As I breathe, I can feel the weight in my chest and I whisper… “I need this pandemic to be over.”

The lack of response confirms what I already know, that it’s not over, not even close, and it may get far worse before it gets better.

“What do you need?” The ask is softer this time, almost with more patience and understanding.

As the tears continue to fall, and I find a steadier breath, I try to think logically, of actual problems I’m trying to solve, not just the overwhelming feeling of weight… What are the little things that could help? 

The obvious come to mind: I need a break. I need sleep. I need to not answer to someone long enough to get myself from the 10 level of breaking, back down to a 2 or 3… that livable weight of reality that is easier to manage… When I’m at a 2 or a 3, if a twin pulls the other’s hair, or throws their cereal, a simple “whoops, we need gentle hands”, or “oh no, our cereal escaped our bowl” is my automatic response. When I’m at a 10, or a 12 like I feel like I am now, after another sleepless night with autism, my responses are not quite as kind. I’m a shadow of the parent I want to be, unrecognizably cold and shut down.

“So, what do you need?” it probes again.

How do I get to a 2 or a 3? How did I before COVID?

I had scheduled time… scheduled time that was mine… mine without interruption. Yes, there was a list of things to accomplish, but it was my choice in how they were done. 

It’s been months since my children went to school, or could be taken on adventure for a few hours so I could find quiet. Yes, I could leave, but where would I go?

“Last time… what do you need?” I know my time is running out. The violins are quieting. And reality is calling. Game time decision. Wash your face, girl, or let the world see you crumble.

The truth is… I’ve operated on less sleep. I have three children, and survived through breastfeeding twins. I’ve done this. My muscle memory is already trained and built. I think I’m just resentful that I thought this chapter of my life would be over by now, but instead, plays on repeat.

The truth is… I do have help. I have an incredible nanny who comes five days a week to help me navigate what lately feels like impossible moments of parenting autism during a pandemic to navigate. 

The truth is… I find breaks. We gave up working on the twins’ school weeks ago when the baby napped so I could take the break. And on the nights I really don’t sleep, those two hours are enough of a power nap to keep me on track.

“Think”, the voice smiles, “What do you need?”

And then it hits me.

I need to know it gets better.

I need to know we’re not alone in this, and that someone else has survived it.

I need to know that this type of chapter in raising littles with autism, or twin boys, or just three kids in general didn’t destroy someone else’s marriage, turn them into a cold, shut-down and mean monster of a person, or kept them from giving up completely.

I need to know that someone else’s special needs children who were up all night every night, (we’re going on 17 out of 22 nights right now) eventually slept through the night.

I need to know that kids will go back to school, and that the administration responsible for making that happen is aware of the repercussions this time is having on children who’s needs can’t be met with remote learning.

If I can find the lighthouse to focus on, I can weather the storm, and ride the waves. I can refocus, and celebrate the small wins that get us inches closer to that brighter destination. Not sure what it is yet, but anything is possible when you are willing to work for it, harder when necessary, never giving up.

I can feel my body rise, my hands find my cheeks to wipe the dampness, and my feet find the steps before them that walk me back to reality. 

This may not be over anytime soon: the extra strain that this pandemic has placed on so many of our realities. But if I can’t control the uncontrollable pandemic, I can choose to accept it, and only focus on what I can control. 

Dear reader… if you’ve been there, and gotten through it… share so that those of us who are in it, know we are not alone. And if you are in it with us, if any of this resonated, know we see you, and you are not alone. I have no idea how to fix it, but I promise to keep sharing in case it helps in any small way. 

Here’s to the lighthouses that make the waves of any storm feel possible to weather. May you find yours soon. XO

Are you grieving?

The five well-known stages of grief are: denial, anger, bargaining, depression and acceptance. Until recently, I didn’t realize what I was feeling was grief, but now that I’ve made my way through all five, I thought I’d share in case helpful for anyone else…

I can remember hearing people say “this isn’t a big deal”… and “I’m not taking it that seriously.”

I mean- yes, I agreed on the toilet paper ridiculousness. Milk, bread, cheese- sure, but toilet paper? Still don’t get it…

But those first few weeks, I feel like we were all in denial. I know I was. 

I thought, “this is temporary, everything will go back to normal tomorrow.”

For me, it lasted about two weeks- and only a week of homeschooling, since our school gave us the first week “off”.

After the first week of filling out forms, taking photos, working on apps, and ignorantly believing I could create the school day in our home in a way that our autistic twins would find comfort and confidence in the routine that ended without warning. 

And then, the second stage hit: anger.

Granted, I had every right to be angry. I lost my nana, the matriarch in my family. But, I found that I started blaming anyone for anything because, quite simply, I was really mad.

I was not alone- my four-year-olds were with me. They yelled and screamed, and stomped their angry feet (calming tactic in this household). They were sick of doing the bear hunt, or practicing the letter “C”. And they started to take it out on each other. 

At one point, not that I’m proud to admit it, I was even mad at their school. How could they think that our autistic toddlers could actually get the services they need from home? (Clearly unfair of me to say, their administration is amazing, but I was mad, and needed to stomp my angry feet).

This lasted about a week for me. My practical self found it’s way to bargaining, and started to wish for any hope of summer school, claiming that if only this was happening to me ten years from now, when zoom calls could work for our kids… or if only I had arranged for services in the home to help the boys with OT and speech, then maybe we’d be able to provide a similar structure to what their used to… or if only I could set up an outdoor playground, complete with trampoline and a swing set, the boys would have everything they need to fill their days which means they’ll sleep at night…

I’m not going to lie… I did convince my wife to let us get the trampoline, and it was worth every penny! (If you need one, check this one out. Our friend did a ton of research and got it, and when I researched it, couldn’t agree more, and it’s SO amazing for the kids and their energy needs.)

And a swing set is in her shop, freshly painted, ready to be assembled thanks to an incredible human being who not only gave it to us for free, but kept it in his garage all winter when we forgot to pick it up last fall. SERIOUSLY incredible human being.

And then, last week… I hit the depression stage. I let my anxiety get the best of me… every time I read a headline that said school was officially done for the semester, that summer school wouldn’t happen for our kids… and that some areas were going to stay at the current status quo until August… I just got sad. Unbearably overwhelmed and sad. As it was raining, I gave our crew permission to quit school that week, saying if we got anything done at all it would be too small a win to count. The drama got a hold of me (and my kids, mind you) where I started to feel like this was the end… the end of all that was good… and how on earth could we ever get through this?

Thank heavens this week I found acceptance.

It’s like out of no where, it hit me. Snap out of it, Christina! Yes, we don’t know exactly when this is going to end - but it will end. Yes, it may be almost a full 9 to 12 months of school the kids have missed, but they will go back to school. Yes, the really tragic loss in this country will continue on, but eventually, it will stop. 

If you find yourself in any of the other stages before acceptance, maybe this mindset will help you give yourself a little grace, because whether or not you’ve physically lost something, you are experience grief. You are grieving what you thought your life would be right now, and the reality that a loss of that size has had an earthquake of an impact on your life. On what it was, what you thought it would currently be, and what it is to become. 

Defining moments are happening around you, and if you are like me, stuck in any stage but acceptance, you might be missing them. 

Moments I’m now paying attention to include: 

• Letting Jack need to hold my hand to fall asleep at night, and only mine. As exhausted as I am, he’s not going to want to do that forever. And as much as it’s DRIVING ME BONKERS that he literally needs me all day, it’s a humble reminder that one day he won’t need me, or even want me, and that will be the moments I’ll wish to have back. 

• Mustering up the energy every time Luca locks eyes, and excitedly begs “two eyes, nose, sharp teeth”, waiting with such sweet anticipation for me to make a scary face, raise my hands up with pretend claws and say “It’s a bear!” and chase after him for the 100th time that hour because he’s fixated on “The Bear Hunt”. I know it’s because it’s a world in which he and I understand each other, where I’ve gotten to his level, and listened and validated what he needs, despite any communication barriers. 

• Having a toddler during quarantine has been such a unique blessing. Alex lights up my day every time she barges through a room, shifting her hips in excitement, without a care int he world. Her smile and giggle just melt your heart. And as I watch her love her brothers, with such unfiltered admiration, learning from them, and teaching them at the same time, it gives me such needed perspective. And the moments when I feel her learning from my wife and I, like how when she’s really tired, and just wants to be loved, or give love, she will let you hold/rock her, and will softly rub your back, almost like she knows you need it, but with an equal encouragement asking you to rub hers in return. 

My best advice, after making it through all five stages, is to just hang in there. You’ve got this. Look for the facts in the situation that will help ground you in reality. Just make it to acceptance where you can remember that although this is hard, awful, sucks, and even unbearable at times, there’s such incredible collateral beauty in all of it. XO

If my son was in your care...

Before COVID-19, a good friend who is a social worker asked me what advice I had for her as she worked with children on the spectrum in hospitals. At the time, I had some thoughts, but never got them to paper.

As I sat today, during one of the tougher days with the twins, I found myself grasping for perspective, and my thoughts landed back to that conversation, but how it relates to our current state. What advice would I have for anyone that needed to care for either of our boys, but particularly Luca who hasn’t found all of his words to express what he needs, should he be put in a situation where I could not be present as his advocate, caretaker, and comfort. 

Although the emergency rooms are not filled with toddlers his age, we just learned of the death of one while we watched the news last night, which means it could happen. That in mind, if this is of any help to someone who’s responsibility is to care for a child like Luca, here’s the only advice I can think of that could be helpful. 

If you find yourself needing to care for a boy like ours, in a situation where we could not be present, he would be in fight or flight mode... and he hasn’t let me cut his nails this week, so if it’s fight mode, he will draw blood and leave a mark... like the one he dug out on my chest today. Please be gentle if you need to protect yourself. He is little, and even though he is fiercely strong, he is our baby, and he’s just scared.

If he runs from you, you will not catch him, as he is fast on an average day, but could outrun a championship linebacker when he’s scared... and his little body can fit in places where you won’t be able to find him, taking away your time and energy to search for him when you are needed somewhere else. Small spaces will make him feel safe, and he is far too good at hide-and-seek, so please don’t let him run. 

When you finally catch him, he will laugh at you when he is scared or sad, worst if he is mad... but he will break your heart when he finally cries, because the anguish in his big hazel eyes will pierce through your heart. He loves compression, so if he lets you, please hold him tight… give him a moment when he thinks you are us, and when you feel his body release, please hold on for another minute longer, so he knows he’s not alone.

When he finally starts to trust you, I hope you have an iPad, and YouTube installed on it. Make sure it’s charged because he will use every ounce of juice it has to calm down by focusing on finding his videos. 

And please, for all the love there is in this world, have some kind of box or bag of figurines or cars that he can inspect, line up, and use to take his mind off being so scared. Even five or six pieces to give him enough of a grouping to require order and sorting will be enough. Get creative if you need to. 

Lastly, by no means am I trying to tell you how to do your job, as I know that what we are asking as a society during this pandemic is already too much, so I hope you don’t take any offense in the extreme measures I’m asking you take with my son, or children like him. My job is to make sure he doesn’t end up there in the first place, so we will continue to stay home, wash our hands religiously throughout the day, sanitize everything, and pray that our children do not end up in your care. 

But if for some reason my son, or a child like him, does end up in your care, please don’t worry about anything I just asked of you… because there isn’t anything that will stop a parent of a special needs child for being there when their kids need them… not even COVID-19, so I won’t be going anywhere… you just keep on with the good work you are doing doing your job, and I’ll keep on doing mine. 

In the mean time, I’ll keep remembering that this too is temporary, and all the sleepless nights that he is having without school, or a dependable routine of *OT, speech, and one-on-one attention from an aide, and scheduled dependable expectations with learning and social interaction… this too will all be a memory eventually. If you’re strong enough to leave your families every day to protect, care for, and save families like mine, the least I can do is work to keep my family out of your care. 

*This post originally mentioned ABA therapy, as the twins attend a school that incorporate some principals of ABA therapy. As we are two years into the diagnosis, all I know of ABA therapy is that our school has deemed it as the least restrictive environment of it, and any time I’ve mentioned it in the past, that’s what I’m referring to. I’m grateful to those who have clarified what it entails, with far more experience than I. I am merely trying to share our story. Thank you for being here.

How Parents Are Made

How Parents Are Made

“Children with special needs aren’t sent to special parents, they make parents special.”

When that powerful quote found its way onto my social media feed, I caught my breath. In the similar way to how Shonda Rhimes resonates every Thursday night in her opening and closing lines of each Grey’s Anatomy episode, it challenged me.

Since the twins’ diagnosis, I’ve settled on the mentality that we were given this family, because Steph and I could be to them what someone else couldn’t. I’ve cringed at my poor parenting, and picked up pieces of my broken heart during the really hard moments of COVID-19, and all the chaos it’s ensued on their diagnosis that catch me when I’m too tired or too frustrated to be the best version of myself. The last few days, in particular, in dealing with the loss of my Nana, has left me emotionally spent, with very little energy available for anything else.

I have questioned a million times over the saying “you are only given what you can handle”, and used it to comfort the exhaustion away, with some naive hope that we were special and chosen for our kids because we had the patience, kindness and life experience that would make us exactly what they needed; exactly what our magical children deserved as they navigated life with the autism diagnosis.

And then the coin flipped.

What if we weren’t here for them, but they were sent for us? What if they were gifted to us to make us better people, make us more patient, more kind, and provide the life experience in raising them that we will ultimately need for something bigger in this life? 

This last week has been tough in our journey with autism, particularly in managing the constant behavioral outbursts. Not only are they boys, but add the twin factor, and the little sense of remorse Luca feels (currently), with every weight of remorse that Jack feels (hopefully only currently as well) and it’s been a non-stop fist fight for days. I will say, Luca has a serious potential career in baseball- as he can nail his brother in the face, every time, with his water bottle, from as far as 10 feet away. But last night, he decided to give his sister a try, while she was just sitting there watching TV, and the bruise is still fresh on her cheek.

When we try to talk to him about it, he scripts an “I’m sorry” and goes back to his business, without any explanation of why the behavior happened, or indication on how to redirect it (or even intercept it) in the future. I keep going back to remembering that all behavior is communication, but I can’t figure out the lesson in this. And just when I was finding comfort in the expansion of his vocabulary through the great work happening at his school, life got paused for the world, and I now worry that my lack of teaching experience will cause a regression in our sweet boy’s progress. I worry that my own inability to muster the energy he needs, that he used to get from a one-on-one presence in his aid, for an entire school day, where he was tended to, challenged, inspired, loved and entertained by, will make him angrier as each day goes by.

As I watch our daughter during quarantine, who takes her naps without fuss, plays joyfully with Jack in between them, eats anything (and everything) out of the pantry and fridge, and is more than content to cuddle up to a movie on the couch, I let that concept of children gifted to their parents sink in. If we ever needed to believe that we were decent parents and had any chance of being what our twins need for the next however many decades we are blessed with them, Alex gives us that reassurance hourly.

Because, if I’m being honest, on the really hard days especially lately during quarantine in COVID-19, a parent to a special needs child could be asking themselves, “what did I do to deserve this?” I know I have. Especially at 1am, when Luca is having another sleepless night with autism, and in his frustration he’s kicked me so hard in the face I know I’ll have a decent shiner the next morning. Despite whatever pity party my small violins start to play, they are always followed by the sad question of: “what did this beautiful, sweet boy do to deserve feeling like his only resort to communication is to fist fight or hurt someone until they understood what he was feeling?” 

I hope, dear reader, that as you read that statement you felt the humanity behind it. Because although those moments are few and far between, they are real, and they are something that I know I’m not alone in feeling. If I am to share our journey with you, I need you to see all of it. And maybe, by my sharing, it can help someone else to understand from my perspective they didn’t already have. 

For every moment our life gets so hard that I don’t know what I’m doing, that I question if I can keep going, or that I start to question why I was chosen for this, I have 1,000 more moments of joy, and completely rewarding love, and a reminder that I am worthy. Parenting, and every moment of it, is a gift. Parenting during COVID-19, however, is an even greater gift. Because during these unprecedented times we have to parent at a whole other level. Even though I know it’s a gift, and completely worth it, I’d be lying through my teeth if I didn’t admit to wanting to quit on the daily lately.

Many parents are being asked to work full-time jobs from their homes while ensuring their children don’t fall behind in school. Parents like ourselves, who have littles with special needs, are being asked to find greater patience, greater understanding, and quite frankly, a greater sense of fun to keep each day and every day healthy, safe, and open to learning for their littles.

I didn’t sign up for this. Despite being on every possible wait list for ABA services in the home, I hadn’t found time to apply for social security for the boys, which I was told would be the only way I’d ever get to the front of the list to get help, because I knew the incredible team that was working for them at school was killing it, so social security fell low on the priority list. I had no way to know that we’d be quarantined with returning to school a dream far off in the long distance future. We’re not even sure if they’ll get to go to summer school, or what will happen this fall if we get another wave of this. Even as I type this, the weight of my anxiety sits in my chest and it’s suffocating, knowing that in my email inbox is a letter from the school asking that I wave the state requirement for our kids to get the services they need- because during a state of emergency they cannot provide them at this time.

Staying solution-oriented, the only perspective I need to have is to just keep going. My family is healthy. We have an incredible nanny who is helping every day, which is leading to proactively stopping Luca’s aggression at least 50% more than I can on my own, resulting in 50% less chances of injuries that put our family needing to go to the ER. The kids are loved and cared for and safe. 

If I adjust my understanding from that we’re not given more than we can handle, to the idea that every test of the last few weeks, and last four years since we became parents, are lessons and opportunities to learn how to be a better parent, inevitably being able to handle more adversity, change and growth, then maybe COVID-19 won’t seem like a nightmare of a running a marathon I didn’t train for. Maybe adapting the student perspective, believing that every behavior is communication, turning on those listening ears I keep begging Jack to make sure are working on his head - maybe then this will start to feel more like the training piece… the starting from scratch, learning how to use my muscles to work for me, listening to what they need as they train for the many miles ahead… sharing stories with strangers to help pass the time, making life-long friends from the similar terrain we run together… maybe then, this will just be an introduction to the beautiful adventure ahead - the one where the finish line isn’t why you started running in the first place.

Every child is magical in their own way, unique and different and bound to be incredible humans one day. But those on the autism spectrum, as they dance outside the circle a neurotypical child typically operates within, showcases focused areas of attention where their magic can truly shine. Where there may be areas of learning that do not come naturally to them, it leaves room for the areas they truly care about, and due to that extra space of interest and excitement, can teach you things you may never have known before.

For my fellow marathon runners on this new terrain of parenting, remember to keep eyes ahead, breath through the tough moments where your body tells you want to quit, and rely on that muscle memory built from love, sweat and tears… If you need someone to run a few miles with, I’m here… with stories to distract you, and working listening ears at your disposal, for as long as the pavement lies ahead. You’ve got this. Xo

Raising the Wild...

To the ones raising strong-willed children, who have big feelings but haven’t fully learned how to work through them yet, during this “unprecedented time” of social distancing and quarantine… this one’s for you…

We made it through our second week of home schooling for our twins this week, and I’m wiped. Going into the self-quarantine, and taking on working from home while trying to home-school three kids under the age of five (with help), I naively thought my greatest challenges would lie in working with Luca, and meeting his needs in the dependable way his teachers do at school. He has a team working for him five days a week, observing, evaluating, and attending to him during school hours in ways that I had no idea how I’d be able to while at home. I worried about his aggressive outbursts, and how I’d manage them in the hours I would be outnumbered 3:1, especially if they got more frequent with the lack of scheduled activities and individual attention his aid gives him.

But ya’ll… NOT EVEN CLOSE.

I’m exhausted.

I’m fried.

I’m wiped.

Not because working with Luca to meet his needs hasn’t taken energy- it has - but he’s been awesome, and receptive, and worked on using his language in ways I wasn’t able to experience before. It’s actually been incredibly rewarding.

I’m tired, not because our toddler, Alex, who is missing daycare and friends in her expected neurotypical fashion, and is needing extra attention because others are not seeking hers in the classroom.

I’m worried about how long the status quo is going to last in our new normal because lately, I feel like I’m…

Raising the WILD.

No, seriously.

Our sweet, caring, and completely impressive boy, Jack, is so strong-willed that I think he might break me. He questions everything all day long. He’s the first to rise in the house, pulling me out of bed before the sun’s come up- and quite frankly- far before anyone else in our household is willing to join him.

I’ve shared how he feels big feelings, but, lord give me strength, his feelings since not having school and connection to friends every day are MASSIVE. They span the open dessert for miles and miles and the suck up every breath of air I have during the day.

Our nanny and I will set up the lessons for the day, and just as we’re patting each other on the back because it’s going well, it’s like his time of the month hits and just because Luca is enjoying it, it means he can’t, and we’re completely derailed.

Every time he decides to share these feelings with our social distanced world, they hit a volume that I swear pulls our neighbors into our bubble, despite that we are acres away from them physically.

And lately, the following tools are what we are focused on having him master:

• Gentle Hands

• Teasing isn’t Kind

• Soft Voice and Open Listening Ears

• Space is Kind

That is the nicest way I feel like I can frame for you the constant tackling of siblings with strength that can hurt and injure, the need to push every button Luca has, the volume of his whine, and the refusal to read the room when someone doesn’t want him on top of him, in case he were ever to read this one day.

Ya’ll…. even when his sister is napping and it’s the nanny and I with the twins, and one on one time is available, it’s still our biggest challenge.

At one point this week, when we learned that schools were indefinitely closed until at least May 4- but let’s be realistic, most likely the rest of the semester - Jack and I were already having a tough day. His anxiety was high, and even though he had had BEAUTIFUL moments throughout the day, when he was able to name his feelings and work through them, or ask for help when needed - I was FRIED, and more so with not having a date at which I needed to make it to, when we could all go back to the normal we so desperately miss.

After I finally got him to bed, during not the easiest bedtime routine, I snapped at my wife, and even went upstairs to take some space of my own. After putting away the laundry that had been haunting me all week, sending the emails to the kids teachers with photos of proof of what’s gotten completed throughout the day, and completing a few business-related tasks for my wife, I finally made it to the shower. I could feel myself relax, had a decent therapeutic cry, and when I finally made it to my pajamas, I could hear my father’s words from the speech at my wedding ring through my ears: “she had a flair for the dramatic”.

I winced.

I laughed.

I smiled, remembering the adoration he had in his voice when he said it.

And then I looked up to the heavens and said “Dear Lord, please don’t let this be my karma.” I’m going to naively continue to live in denial thinking he was merely referencing the many performances on stage he watched during my short-lived theatre career and that 4-year-degree as a Theatre major he helped to pay for. (Humor me!)

Here I was, week two of quarantine, feeling pretty lousy in a pity party of exhaustion, and I was acting like my four-year-old child to my adult spouse. I hadn’t gotten a chance to shower that day, so I wasn’t feeling like my best self to start. I was hungry, because I had maybe been able to snack throughout the day, but despite getting dinner on the table for her, never actually got to eat myself. And the glass of wine that I had on an empty stomach was definitely not the wisest choice.

I was having BIG FEELINGS, and not able to deal with them.

I wasn’t using my words.

I wasn’t asking for help.

I wasn’t owning how the quarantine was making me feel. I missed my family. I missed my friends. I missed my spouse. I missed my freedom when all three kids were at school. My anxiety was through the roof, and hadn’t had a break to speak to the one person who for 45 minutes only cared about how I was doing, and let me talk about anything I needed to say. And I was ASHAMED I was having those feelings.

Just earlier that day I was talking with a friend I admired and cared for, who was working through her anxiety about leaving her family every shift, to work in the NIC-U as one of the most heroic nurses I could think of. Her anxiety was real. Mine was selfish and unplaced, and I was disappointed in myself that I wasn’t able to handle things better for Jack that day, or with my spouse.

What’s going on in the world is “unprecedented” - this term that is making so many of us roll our eyes because it does nothing to reassure us that the worst isn’t the yet to come. The unknown makes things feel hopeless and doomed for worst case scenarios in ways that can make us feel unhinged.

Imagine what it feels like for our wild ones, who haven’t been able to fully comprehend the social stories we’re trying to give them to understand why one day they were living their best lives, and the next day they were told they couldn’t see their friends, learn with their teachers, and play in public places or intimate play dates.

If we as adults, with decades more life experience than our kids, are having a hard time, then maybe we can find some grace and perspective for our littles who only know one way to feel.

If you are raising the wild-hearted, passionate, and dramatic at times souls that I feel like we are in Jack, I need you to hear me when I say, YOU ARE NOT ALONE. This is hard, ya’ll. None of it is easy. But having the unruly who can’t comprehend the simple requests that could make life “simpler” during a difficult time, like “keep your hands off your sister”, or “please keep your voice down”, or “stop teasing or he’s going to beat the crap out of you every time! (no one else? that’s just me? oh, well, ok then… ;p )… and maybe are asking “why” 1,000 times a day because they actually want to learn why something is happening during a time they just can’t understand… YOU ARE NOT ALONE.

The one driving force to my staying sane as I manage all the BIG FEELINGS going on in our household during quarantine, social distancing, and homeschooling, is that something I assume about most of the kindred spirits in my life, who I rely on to keep me steady during turmoil and chaos, inspire me to be a better person because they expect more of me, and are passionate game changers leaving an impactful footprint on this world.

As the week continued, when Jack was overly loud, or extremely needy, or beyond frustrated- I focused on what I’ve found to work from him in the past: we talked through feelings, used token boards where he could earn a preferred activity once he tackled a wanted behavior five times, and used books and songs to understand why we feel certain emotions throughout the day. His favorite, is “Belly Breath” by Common and Colbie Caillat, in case you have a child that might be interested.

Instead of Jack being able to just say “I’m ANGRY”, or “I’m sad”, we worked on adding the “because…” to complete the sentence. By the end of the week, although the tantrums were still at large and the behaviors continual, he was able to express why he was feeling how he was feeling twice on Friday, and even shared with Luca that he needed to “belly breath” because he was “so mad he could not be kind” - his words, hand to God.

I have no idea how long this new normal is going to last. There are days it feels like we are living in Hunger Games or The Maze, and it’s all some kind of Big Brother experiment. All we can do is continue to hope for warm weather where our children can run the wild out before it takes over our sanity. As parents, my wife and I are focused on trying to give Jack the tools he needs to harness that energy and use it for good one day.

With no control over how many more tantrums are in store for us during this new season, or “accidental” injuries are caused to his little sister when he plays too rough, or buttons he pushes with Luca that initiate aggressive reactions… I have little advice on how to navigate the unknown while raising the wild in this different time. But what I can share, is that YOU ARE NOT ALONE, and let’s hope that all of their determination stays strongly grounded in their souls, and used to change the world for the better one day, because as a parent who is dealing with it hourly - trust me when I tell you, it’s not something you want to reckon with.

I look forward to witnessing their passionate advocacy, creatively found solutions, and unwillingness to give up on what they care about, for they are who will be our mark on the world, as we were the ones responsible for raising the wild.

Xo.

He'll Make Friends Anywhere...

This is Jack. He’ll turn 5 at the end of August, and is finishing his second full year at an amazing school in our town, where the strides he has made since he arrived take our breath away. Just yesterday, I met with his team of teachers that work with our boy for over five hours a day, five days a week, providing him the opportunity to strive as he has.

When he was first evaluated by the school, they estimated that he was approximately 12 months behind his peers, in all of the five areas of development, but particularly in speech and gross motor skills. Yesterday, while sitting in the smallest chair, at the smallest table, with five other adults, discussing his progress over the last year, I was humbled by our boy.

I listened as these incredible women (yes, he’s surrounded by INCREDIBLE women who are invested in his future and everything that it holds) rave about how he has interacted with peers for extended play; how he has mastered writing out his letters - particularly those in his name; how he no longer needs to rely on incentives to complete unwanted tasks; and how he is beginning to relay stories that relate to the questions that prompt them. My cheeks hurt from smiling as I listened to this progress. Don’t get me wrong, we knew much of it from observing his interactions and conversations at home, but to hear the pride in their voices as they shared where they saw him excelling was beyond touching.

At the beginning of the school year, Jack relied on stories he’d learned and mastered retelling, in order to be part of a conversation - particularly that of The Big Bad Wolf. Now, when asked about what he did this weekend, he shares in great descriptive detail, the many stories of our adventures. Although his lovely speech therapist was kind enough to not share everything he’s shared with is peers, reassuring me that they only believed about 50% of what students shared on any given day (PHEW), she did shay his conviction made her proud of how far he’s come.

The last time I sat with these women, they asked my thoughts on potty training. Despite that we had tried for nearly six months and failed miserably, I was game if they were! Yesterday, we all celebrated in that outside of overnight diaper’s and the occasional accident, Jack is nearly completely potty trained, something we were starting to question on if it would ever happen.

One of my favorite moments of the meeting, focused on his interactions with his twin brother on the playground, as their classes shared recess together. The teachers delighted in sharing how Jack and Luca look for each other each recess, and play so well together, almost as if they missed each other during their time apart. Ya’ll, as you look at these images- the scars on Jack’s face are inflicted by that same twin brother. They do any and everything they can to get at each other when at home. The fact that out in public they actually miss and look to each other, thrills us beyond belief!

Jack is excelling. He’s made up for 12 months of delays in just two years. He’s making friends, maintaining relationships, and known as an extroverted and happy child. Jack’s tackling speech challenges, and understanding that not all activities can be preferred ones. He looks forward to school each day, and no longer needs assistance in his start to each day routine, or in his preparation to exit. He’s learning how to greet unwanted activities pleasantly, and without fighting the transition.

Jack has autism. Jack’s autism is not displayed by the stereotypical traits one might associate with autism. Jack is learning what his autism means for his life, and more importantly, what tools and resources he needs to find success as he navigates life with autism. He’s making sense of difficult transitions, and that even though he feels big emotions, he can also be aware where feeling big feelings is appropriate, and where feeling them publicly is not.

Jack is still incredibly picky about what foods he likes, and there are weeks at a time where he limits what he is willing to eat to 10 foods or less - sour cream and cheddar chips being one of them (hence the orange remnants around his lips in these pictures). Jack still requires full attention when he’s anxious about something, and has a hard time understanding that someone else might need your attention at the same time too.

Jack lost a tooth, as seen here, at an indoor play place where he was laughing so hard enjoying about to go down a slide, and of course the net grabbed a perfectly good tooth clean out of his mouth, leaving the adjacent tooth that’s been dead since he chipped it over two years ago behind to adorn the now gaping hole beside it. Because of the stress that going to the doctors causes him, and other incredibly important appointments including two surgeries to have his adenoids removed and tubes placed in his ears have trumped a dentist visit, we have yet to take care of that dead tooth. For a while, I would photoshop it out of photos because I was so embarrassed that I couldn’t get him to a dentist. But this is part of the autism. This is part of understanding everything that autism can mean, because it’s as different and unique as every child’s life it touches.

Jack has autism. But as far as we’re concerned, he is a force to be reckoned with. He will be a game changer. A kind soul who helps others. A performer, because the kid can’t stop replaying “Lost in the Woods” from Frozen 2 as he works to memorize every line and every movement that Kristoff does during the song, part of his magic will be how he looks to entertain others away from their fears, their sorrow, and their worries, replacing it with joy. That is part of the gift of his autism. His magic is that he cares so deeply for others that he’ll do just about anything to make them feel better. “He’ll make friends anywhere”, his teachers shared. And he will. Both despite the autism, but also because of it.

Tomorrow, I’ll meet with Luca’s teachers, and can’t wait to share what we learn there as well… Stay tuned!

What is an Autism Diagnosis?

What is an Autism Diagnosis?

According to WebMD, medically speaking it’s... “observing the behaviors of very young children and listening to the concerns of their parents.” It’s documentation by doctors stating that the child is “on the autism spectrum”, opening doors for care and support they wouldn’t get otherwise. 

For us, the autism diagnosis has been a gift. 

It’s been a lens with which to see our children with extra amounts of patience, kindness, acceptance and understanding. 

It’s been a gift to not judge our own parenting or let the judgment of others dictate how we parent our children.

It’s been a reason to relate to strangers outside our inner circle of friends, who are experiencing the same thing, or have in the past, looking to them for guidance and comfort, and providing the same in return.

It’s been an introduction to some of the most incredible educators/administrators/staff for whom we have the sincerest respect and gratitude.

It’s been an opportunity for us to ask more of those that matter to us, giving them the opportunity to show up in ways even they did not know where possible.

It’s been a chance to forgive our guilt. For the first two years of their lives we felt like we did everything wrong, particularly around not seeing the signs of diagnosis, chalking up the lack of language to be a “twin thing” or typical of the male gender’s learning delays.

It’s been a lesson in communication, teaching us every day that as humans we communicate on so many levels other than through speech, showing us connection at the most cherished level with our children.

It’s been a journey to understand that we don’t know what we don’t know. We have no idea on how to parent autism, but their diagnosis has given us permission to tailor our parenting to exactly what they need, each child uniquely different. 

It’s been a reminder that life is not what we expect it to, but that we can in fact handle more than what we thought because of the village that is behind us. 

An autism diagnosis for your child can be anything and everything you need it to be. If you’re questioning, fighting, curious about getting your child tested, the key is to do so early on. A diagnosis only stays for three years, and if your child is diagnosed before three years old, the opportunities for complimentary support are endless. If your child reaches age three, it’s so much harder to get the early intervention help that could provide your child the tools and resources they need to strive in the classroom/society, but more importantly, the tools and resources you could use as a parent to be there for your child the way they need you to.