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.

Connection...

Connection…

Over the last few days, I’ve had Ryan Tedder’s words ring through my head… “Can I get a connection, can I get, can I get a connection… I can see it in my, see it in my reflection… Oh, can I get a connection?”

Ya’ll… we’re oversaturated in learning so much about the current pandemic of COVID19, that it’s hard to think about anything else. As humans who crave that human connection from others, social distancing is something that is scaring some into seclusion, while being ignored by others who aren’t giving it the weight of seriousness it deserves. As parents to autistic twins, one of which thrives from other social interaction, and one of which who could care less if he has it, we can see so many perspectives on the state of our country, and how it impacts our family, and those around us.

As I scroll through my social media feeds, I’m seeing the following…

Friends laid off because they can’t work as schools and public places are shut down. These same friends have families to provide for, and responsibilities to take care of - a heavy burden to bear while in this heightened state of anxiety while we watch the nation’s crisis unfold before our very eyes.

Friends doing the laying off because their organizations cannot withstand the financial hit the pandemic' and the quarantines it is requiring to stop the spread are causing. These friends are doing incredible good for our world, and did not wish to lay off the hard working employees who have given their organizations so much of their time, energy, and commitment.

Friends who work at our bars and restaurants, places where so many of us go to get away from our lives for a night, where someone else waits on us, answers our every request, provides us food and beverage, and often listen to our problems which are not theirs, just to make us feel better - who don’t know what the status of their crucial income will be during the quarantines.

Friends who are parents who are preparing for the home school that will need to happen during the two (or three in our case) week period where their children are home from school for quarantine; trying to understand how to best meet their needs for learning and routine and social interactions crucial to their continuing to grow, while working to earn a living that makes all of that possible for their children. We are in this boat.

Friends who work in our healthcare system, are first responders, and fire and police officers, risking the front lines each shift, to take care of those in need, protecting those who need protection, while aware of their heighten chance of exposure, and the chance they bring it home to their families.

And then I see the response the virus that isn’t serious, and I think about my friends that are listed above, dealing with how the pandemic is effecting their lives, who are also witnessing messaging that may feel like it’s downplaying said impact, or even worse, mocking it.

I’m not here to preach, each effected by the status of our current situation as a world is to deal with it however they can, in whatever way they need to. Hey, we have a son who laughs when he has hurt someone because he hasn’t learned how to deal with shame or regret. We understand first hand how everyone deals with emotions, and how they express them, differently.

All I’m saying is, as we look towards the ever important “connection”, particularly while our world is in crisis, that maybe we should be careful about what connections we are putting out there for any and all to reach.

An incredible human being - like seriously one of the best - named Nancy Lyons, for whom I have the utmost respect and admiration for, went live to Instagram yesterday, and her REALLY COOL company, Clockwork, gave a recap in this article about Social Distancing with Humanity, on ways we can provide connections to those who need it - without compromising others. Check out the list of really smart ways we can provide that connection we’re all craving, and add yours to the list!

Here are a few ways that we intend to connect over the next three weeks, as our children’s school was required to shut down until April 3, and it will require a new way of operating as a family until next month.

1.) ROUTINE CONNECTIONS

Our twins are on the spectrum, so they survive off of routine, but even their little sister Alex finds greater success each day when she knows what to expect (schedule-wise), what’s expected of her (behavior-wise), and when she will get the things she needs each day (food and rest) outside of the social interaction from peers. As we are under quarantine- social interaction in person is a hard stop- but, like we suggested for Clockwork’s list- Facetime play dates and check-ins are definitely something we can arrange, and have begun to do so. Whether it be virtual story-time, or a game of iSpy, there are different ways that we can use Facetime to feel like we are playing with friends without losing out on that in person connection gratification.

2.) NEW CONNECTIONS

I noticed on our town’s Facebook group, that the local senior center was requesting if kids wanted to be pen pals to their residents. My kids can’t write, but they LOVE to send video messages, particularly when singing Happy Birthday. I messaged their director, offering this, and am working to have them sing Happy Birthday in individual messages to anyone that might be celebrating a birthday but can’t have outside visitors.

3.) AVAILABLE CONNECTIONS

I’m going to rely on visual schedules, online guides to activities, pinterest boards for how to make something from nothing, and any resources their teachers provide to keep up with the twins IEPs in order to fill the kids days with on going learning and fun. The amazing @MrsRachelHollis preaches that you can learn ANYTHING with a google search bar and a growth mindset, so this month, I’m going to learn how to be what my kids need so that the learning does not stop, and that this doesn’t become a miserable experience for all of us. Hopefully, in that process, as I continue to gain appreciation for everything their amazing teachers and administrators are, I may gain additional appreciation for myself, and the ability to show up as the parent they need, during their time of need.

4.) PERSPECTIVE CONNECTIONS

This is going to give a LOT of quality time with my kids over the next month. My wife’s company will continue to operate in the homes that are willing, as her employees need the hours, but the majority of the time I’ll be with the three babes. These are moments I’d miss out on without this opportunity. This is a gift. Where some are looking at it as a disaster, I’m hoping considering this perspective will help change some of that. Yes, no one is saying this will be easy, and it’s SUPER easy to have perspective when you haven’t even hit day one yet, BUT as a reminder - there are too many parents who would give anything to get time with their kids like this. There are too many parents who have lost their children to difficult battles with fatal diseases, or tragic accidents, that would give ANYTHING to be forced into quarantine with their children for three weeks. This is a gift. A chance to know them better. A chance for them to know me better. A chance to roll up my sleeves, tackle this ABA thing, work through all my anxieties, and show up for my family. This is a gift, and one I am grateful for.

5.) HELPFUL CONNECTIONS

One of the best messages I’ve seen come across my feed, and have gone on to share, as well as watched friends then share from my feed, is the offer to help anyone who needs it. We do not have an endless supply of toilet paper or food, but we can easily share with those who need it. We may not be able to offer child care (because I’m still figuring out how to go solo for three kids, two with special needs) but we’re happy to be Facetime buddies with your kids to help with boredom or joint home school lesson planning. We may not have hours on end to help a neighbor with all their errands, but we could easily find coverage for an hour or two to ensure they have the groceries and medicine they need by running to the store for them and dropping the items off if they are unable. And for those friends suffering from anxiety like I do, or working through something they just need someone to talk with about, but can’t make it to a licensed therapist during quarantine- by no means do I have a license, but I do have air pods, and a great sense of empathy from experience, and would be happy to be your listening ears at your time of need.

6.) SELFISH CONNECTIONS

You better believe that even though I can’t typically make it to my awesome local Mom’s group’s MOM’S NIGHT OUT, that I will be FRONT AND CENTER with a big glass of wine, for the virtual version later this week. I even offered to figure out what tool we should use to make it possible. Because THAT will be a connection where I can vent, laugh, probably cry, and relate to my peers in a really healthy selfish way. Counting down the days ladies. Counting down the days…

Think about these connections as you are sharing things on social media. We’re all scrolling like crazy. Remember the friends I spoke for earlier in this post. And maybe, post with greater grace and understanding for those this impacts, even if you feel like you aren’t one of them…

So, Can I get a connection?… xo

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.