It Will Be Ok.

I’ve had a hard time finding the voice to share lately. 

The story I feel it’s imperative to share, is a hard one to put out there.

You see… now that the paperwork’s been submitted… soon, we’ll find ourselves in that small white room again… that sterile environment with intentionally placed toys… and a team of humans in white coats with clipboards….

When I think back to the first two times... 

How unprepared we were… 

How truly naive we were… 

How scared we were…

I keep trying to think of what I wish someone had told us about autism… 

What I wish those white coats had said to prepare us for the last three years… instead of asking us how strong our marriage was, what child care we had lined up since we both believed we should still be able to work for a living, what expectations we had for our children, and what our support system of friends and family looked like…

I remember looking at them blankly as I squeezed my wife’s hand, thinking, “Is this really what you want to talk about?” Furiously feeling unprepared for whatever we were about to face… 

And now, as we prepare for the third time around, I realize all I wish they had told us was…

It will be ok.

That “there will be days when you’ll worry he’ll never speak…. And that when he cries in frustration it will break your heart in ways you never knew it could be broken…”

That “there will be days you’ll wonder if you’ll continue to spend what feels like half a mortgage payment on diapers for the rest of your life, and as he starts to out grow the only sizes left, you’ll start to research prescriptions for the larger sizes…”

That, “when they ask you how strong your marriage is, it’s because there may be days that feel so long and so impossible, that you and your spouse start to turn on each other because how could you get mad at an innocent child…” 

That “there will be days that you will not be able to show up for the friendships you had, and you may miss out on important occasions, like standing beside them as they marry their true love, because you can’t leave your children alone for a few hours, let alone a few days for wedding festivities out of state.” 

That “there will be days when you hit rock bottom, and while you’re at the doctor’s office for your annual physical, you will cry if they ask if you feel safe at home, not because of an unruly marriage, but because as your child gets older and more aggressive, you actually fear how long you’ll be able to keep both him, and yourself, safe.”

“There will be days when you are simply lost at who to name as a caretaker to your children in your will, because the reality of the situation may simply be unfair to leave behind, and you will decide you simply cannot die.”

I wish they said some of the hard scenarios we would inevitably face with not just one, but two sons on the spectrum. 

I wish they had given us the perspective of, “buckle up folks, this isn’t the parenting road trip you thought was in your windshield ahead”. 

Because had they said that, I feel like they would have finished with “BUT, it WILL be ok.”

I know they’d emphasise the WILL when they’d say...

“There will be a time when your child finds his voice, and teaches you the definition of what it means to sing as if no one is listening, bringing you to tears of pride and joy.”

“There will be a day when you don’t think you can try any harder, and it suddenly clicks for him. It won’t take him weeks to potty train, but hours, and that surplus of diapers you have stashed in the basement will no longer be needed.” 

“There will be days that have what may seem like such small victories to others, but to you both feel like both heaven and earth have been moved for your child, that only your partner in this race of life is who you would ever want to share it with, bringing you closer than you could ever have been without the struggles.”

“There will be a time when you show up for a friend in a way that only you can... like when another mom hits their rock bottom, but you are there to pick up when she calls, and show up in the most authentic way so she knows that not only is she not alone, but that for her family, too, it will be ok.”

“There will be a healthy way to teach your child emotional intelligence, and the importance of using the words once he’s found them, instead of the physical aggression to work through how he’s feeling, teaching him at such an integral age that allows him to show up for society as a better human being decades later.”

“There will be days when you count down the minutes until you can tell his therapist/teacher/para about the small victories you and your spouse basked in earlier that week, and you will cry tears of joy together, because that administrator knows just how amazing each small victory is.”

“And that there will be someone in your life who knows your children and will love them enough to show up in every which way they need. You will know who they are because they will be actively present in your life, and when you ask your child who they want to be their valentine, he will name her before he ever thinks to name you, because she has shown him her love every day since the moment he was born. And if someone, heaven forbid, had to fill your shoes when you were gone, he’d trust her to do it.” 

It will be ok because parenting autism, or even having autism, is not the be all end all of what it means to be ok. 

It is challenging, but it is beautiful. 

It is lonely, but it presents the most authentic relationships of your life. 

It is sacrifice after sacrifice, but it is also reward after reward, in every sense of the phrase.

It is something that not everyone will understand because not everyone was built to understand something of such magnitude. 

But you, my friend, were built for this. 

And it will be ok.

I found the voice to share this because… whether or not our third child receives a diagnosis when we leave that white sterile room this third time around simply does not matter.

What matters is, that IT WILL BE OK.

If you have someone who needs to read this, please tell them, IT WILL BE OK.

If you, yourself, need to read this, IT WILL BE OK.

Every day, for the next chapter of days to follow, IT WILL BE OK.

We see you. You are not alone. And it will be ok.

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.

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. 

When your kids don't feel well...

One of the hardest things I have found through this journey, is watching one of our children in pain while feeling helpless to figure out how to help.

Luca woke up last night after being asleep for about an hour - screaming in pain, and it wasn’t until after five or six very long minutes of our trying to get him to tell us what was wrong, trying to give him words like “it hurts” or “owie” to differentiate if he woke up with a nightmare or if he was in excruciating pain; showing him his “what hurts picture chart”, begging he show us what hurts, to simply work to calm him down enough that his actions began to focus on his ear, tugging and pulling and screaming as he refused to let me let him go. 

Luca was so upset but refused to take pain medication, so we did what tends to happen when the twins are in that much pain- a Tylenol suppository- which is equally awful for both the child receiving it and the parent providing it.

After about ten minutes, the medicine kicked in and his shrieks became cries, that began to subside to whimpers. We held him as long as he needed until he was ready to go back to bed, truly exhausted but still in steady pain.

Thinking our boy would finally be ready to rest, we went back to bed, only to hear his level 10 pain screams again. We took him from his room so he would not wake his brother and walked him around the kitchen, holding him close and trying to comfort him while we checked with our doctor. After being advised to try Motrin- which inconveniently does not come in a suppository, we had to hold him tight and work to get him to take the Motrin (majority of which he spit all over us). 

This is when his fight/flight mentality kicked in, and he ran for the basement door to leave the house. After trying to distract him in numerous ways, and calm him down so that he wouldn’t wake his siblings, I decided to put him in the car and drive towards the ER in case he couldn’t calm down. I grabbed warm clothes, socks and shoes, and both our jackets, and we headed out the door.

Two minutes in the car he was at peace- still holding his ear, but the movement and being strapped in tightly in his car seat, upright where the pressure would subside. 

Great, I thought, some peace for the poor kid. But then, as I was driving with instrumental pop on Spotify to sooth him, I realized that it was nearly 10:30pm at night… and I was tired. I don’t mean the kind of tired where you’re annoyed to still be up… I mean the kind of tired that was dangerous to be driving. So I text my wife and said I was going to bring him back. He was content after all, right? 

The moment we got back to the house and I brought him upstairs, hoping we could cuddle together to a movie until he passed out, he started screaming again. Loudly! I tried bringing him to my bed, where he refused to stay, clearly determined to wake the whole house up. I ended up snapping at my wife when she asked why I didn’t just bring him to the ER like we planned- because she was saying it from her position tucked in bed where she’d been sleeping while I had worried about driving off the road with our son in the back of the car. 

When Luca tried to escape again, still screaming, I realized we very well may need to be in the ER all night. So I grabbed our things again, put him back in the car, and headed to the hospital. About 15 minutes into the drive, he began to fall asleep. I thought about the ER during flu season, and how many joked the hospital I was headed to was where people went to die. I thought about the hospital bill that would come from a potentially long evening with a screaming autistic child where I could be told there was nothing they could do, while exposing Luca to something much worse. So I decided to take a left and head home instead of continuing on to the destination. I got home and it was just before midnight, but this time Luca was so exhausted he let me cuddle him in the guest room until he passed out. 

I crawled back into my bed after midnight, drifted off to sleep, and felt a jolt a few hours later when Jack crawled into bed with us at 4:30am. Oh the #sleeplessnights of parenting children with autism. You’ll hear so much in regards to the lack of sleep I’ve gotten since pregnant with the twins, which will better support the fact that the one blessing in disguise last night was that Jack actually slept through the night so that I wasn’t juggling two sleepless toddlers. There truly is always something to be grateful for if you can keep the right perspective. 

I brought Luca in to the doctor today expecting without a doubt in my mind that he would have a nasty ear infection. But after a quick examination from the best doctor I know, she declared his #eartubes were in tact and clear, there was a little drainage, but otherwise, he would persevere. The direction was to try Flonase and continue with the tylenol/motrin. Although I did not get the diagnosis that would give him a shot of antibiotics and magically cure everything for him, I did watch Luca get on the scale by himself, and then ask the nurse to check his height but standing under the measuring tape anxiously looking up at her; I listed to him say hello to the doctor, and let her listen to his heart beat without fuss; and I watched him proudly grab my hand when it was time to leave and say “see you soon.” All important moments that didn’t happen at our last visit less than 3 months ago.

And yet, I sit here as I type this, and I anxiously await the day that Luca can say to me, “Mommy, my ear really hurts”, or “yes, the medicine helped”, or even, “I’m so sad”. I know for so many parents of amazing nonverbal children, they’ve navigated the other opportunities for communicating with their children beautifully, and this is an area in which I should find patience and excitement for those days, versus the anxious frustration I feel in the moments when I cannot help my son. But I am human, and I am forever grateful to have a partner in this #parentship (parent partnership), so that I do not have to navigate it alone.