Anatomy Lessons with Tommy…

Picture it…late June 2021. My Suburban was loaded with 9 days worth of luggage, Tommy’s new stroller that accommodates bigger kids, Tommy’s “supplies” of pull-ups, cases of formula, coolers and every stuffed animal and game the boys needed to survive a car trip to Disney and back. Riding shotgun was not Eric (he was smart enough to keep working), but “Macole” (see “Monsters University” post, April 22, 2018). She’s been our ride-or-die for years. The 1 am sojourn began with excited anticipation of finally going “home” after over a year of closure due to the pandemic.

By the time late afternoon hit on that first day of driving and we made our obligatory stop at “South of the Border,” I was close to hitting the wall. I could not hear another word about video games, Super Smash, Minecraft, Godzilla, planets, or Roblox. Fortunately, Nicole was beginning a new grad course as part of her masters’ in education (I hate to tell everyone I told you so, but I told you so. She is a natural. When it comes to dealing with students and special education, you can’t fake it. I know lots of fakers. She’s not one of them. Trust me.). Her first day of class was a ZOOM call from the car! I was so excited. It forced everyone else to be quiet for over an hour. It also meant we weren’t stopping for dinner. I didn’t mind. I had one goal: get to Savannah, Georgia for the night.

I should mention that we weren’t traveling alone. We were part of a two car caravan. Cat and her now grown family of young women took turns following us or leading the way. By 9pm when the rain came gushing down and the wipers were lulling me to sleep, I just couldn’t drive anymore. I was toast. It was time to stop. Were we just a few miles short of Savannah. I know close only counts in “horseshoes and hand grenades” but this was going to have to be close enough. There was only one problem: all hotels were booked. I just couldn’t drive any further. Thankfully, there was room an an Econo-Lodge at the end of the strip of hotels what seemed to be luring us away from I95 and into the dark woods. Phew. Let us lay our heads.

The walk from the Econo-Lodge office to our motel room should have told us all we needed to know. I’ll get right to the heart of it. Folks lived here. I saw “plants” in the windows, smelled “funny” smoke, and the swimming pool in the center courtyard was green with perhaps some furniture in it. I didn’t care. I had to sleep. Mind you, there were nine of us in total traveling. Within an hour, only one of us had eaten and was asleep: Tommy. The rest of us shared whatever was scraped from a nearby fast-food fry-o-lator, which wasn’t much, and lied atop of filthy beds in two dingy rooms with furniture pushed up against the doors to prevent intruders. One of Cat’s crew in the other room looked up crime rates in Hardeeville, Georgia and sent the rest of the group screen shots of statistics that hinted at what may lie ahead for us. Nicole and I were laughing so hard that tears ran down our faces, we couldn’t breathe. “Got a roof over your head?” “Yup.” “You’re fine, go to bed.” How bad could it be?

Tommy doesn’t sleep much. We were up really early. As soon as sunlight broke we took a walk. Huh, someone at that nice establishment drew “spaceships” all over my car in the dirt cars are covered in after highway driving in the pouring rain. Fun. Tommy loved the spaceships…except they weren’t spaceships. I had to figure out a way to clean them off before Will saw the male anatomy on our windows. I couldn’t wipe the ones on the paint, it would scratch and be there for eternity. If Hardeeville didn’t have a clean room or an order of fries, they sure as hell didn’t have a car wash. Besides, other cars had it worse. I figured if I didn’t draw attention to it, the kids wouldn’t notice. So I thought.

Side note: seeing the swimming hole in daylight took my breath away. So did the residents. We had to get out of there. I had to shower. I had to. It was so gross. If you know me, I can’t go in public with my bed head. I certainly couldn’t pull up to valet at Disney looking like a “Hardeeville Horror.” As soon as we got everyone up, everything packed, we peeled out. Besides, this would put us in Orlando far earlier than we expected.

No sooner did we hit 95S did we realize the VERY NEXT exit was a slew of much nicer hotels. Oops. Keep driving. I hoped no one else noticed. They did. Nicole and I laughed even harder. Only us. We put in “Angry Birds 2” for the boys to watch on this last leg.

“Mom?”

“Yes, Tom?”

“What are those bumps girl birds have?”

Will immediately was trying to get Tommy to stop talking. He’s at the age that he knows and he was so embarrassed. “Oh my God! Tommy S T O P! Tom, STTTTOOOOOPP!” A quick glance in the rearview mirror revealed an embarrassed Will who turned beet red. Up front we were trying to hold it together.

“Mom! What are those called?” Tommy was persistent.

If I answered him, then it would be no holds barred. I had to tread lightly and delicately. Yet, we were cracking up. Maybe if I ignored it, he’d stop. I thought he did. I thought wrong. I finally capitulated and just told him that girls have them and boys don’t and left it at that. I should have said absolutely nothing.

Picture it…day 2 of our 1,089 mile trip. We finally arrive at Disney’s Old Key West. Black Suburban and White Tahoe pull up the valet portico. Tommy was the first one out. He was stimming hard. His arms were flapping uncontrollably and he was bouncing up and down with excitement. This kid was completely oblivious to the fact that aside from me, everyone else was sporting a film on their body from sleeping in one of the scariest motels after riding in a car since 1 am the previous day. We had narrowly escaped being a crime statistic and were slightly traumatized. Not Tom.

“Welcome Home!” I heard from the cast member.

By the time I walked around the back of the car toward the other side I heard Tommy say to himself, audibly to everyone, “boy bird.” “Look, we have a spaceship car!” The woman cast member (not well endowed?) replied with a very half-hearted, deflated reiteration “welcome home.” As if Tommy’s miscalculation in gender wasn’t bad enough, I turned back at my car and saw the sun shining on “spaceship” after “spaceship.” I quietly inquired about a car wash…perhaps a real good power wash and offered a hefty tip. Nicole on the other hand rolls with 99.99999% of punches and asked where all the other “birds” were. Good cover-up. I still cry laughing every time I think of what we must’ve looked like to that poor woman at Bell Services/Valet.

Nicole and I spent the rest of the week helping Tommy decipher the difference between men and women, boys and girls, male birds and female birds based on bumps. He was quiet enough that I think no one knew what we were doing. If he offended you, he offers no apology. He’s learning. Sometimes it’s like groundhog day with him. One day it will click. Nicole and I laughed hysterically every time Tommy made an observation. Read in between the lines here. Flat chested women are boys to him and heavier men are girls. The humor is in his innocence and inability to generalize. He’s also so pure and well intentioned. He wants to learn. Nicole and I are also aware of people’s “Achilles’ tendon,” including our own. We were not exempt from his miscalculations. What else could we do?

As usual, I learned a lot that week. 1) Stay away from the Hardeeville Horrors, you’ve been warned. 2) Keep the exterior of your car cleaned. 3) Tip the cast members at Disney well. 4) Find the humor, life is too short not to. 5) And lastly, and probably most importantly, when someone has a gift, a true gift, encourage them to pursue it. “Macole” is a natural when it comes to education and working with people with disabilities. When it’s natural, one doesn’t need to tell you how hard they work and fight, they just do. The world needs more of her.

I actively chose to quietly honor on April 2nd this year (World Autism Awareness/Acceptance Day) all of the folks in our lives who are the “Macoles.” They offer support and dignity to people like Tommy. It’s nothing short of what they deserve.

I would be remiss if I didn’t…

December 18, 2021

The holidays are always a reminder of those in our lives we cherish, appreciate, and miss. I have felt this more acutely in the last week or two and would be remiss if I did not acknowledge a few folks whose words and actions meant more to me than they could possible know. It’s been weighing on me.

To make a long story short, Will (Tommy’s older brother…by a year chronologically, but socially decades) was interviewed by a Boston news station about his dedication to his brother and others with disabilities. Will has no angle. He genuinely wants to help; he’s an empath. The fact of the matter is, Will has ALWAYS known Tommy for who he is and he sees how the world views both Tommy and those like him. It pains Will. James is different. He doesn’t understand Tommy in many ways. He doesn’t have the history with him like Will does. James is learning, though.

Anyway, few days after the story aired, a stranger reposted the news channel’s link with comment something to the effect of “great job, little dude” on a social media page that is comprised of hundreds of members of the community in which we live. You know the pages, most communities have them. I don’t frequent the social media page nor do I care to; participants can be cruel and brutal.

At work two days later, I was made aware of the thread and some of the ignorant and nasty comments. They were directed at Tommy, me as his mother, and those on the autism spectrum. As I read them and took a quick mental note of how many “likes” or “hearts” those nasty comments garnered, my heart felt like it shattered. I immediately felt pressure in my chest, my face was flush and I was fighting back tears. I don’t know how adults can be so vicious towards any child who genuinely wants to help fellow man. But that’s not what crushed my soul.

One comment in particular was the crux of the matter: “he needs to learn to adapt.” No, actually, Tommy doesn’t need to learn to adapt or live in our world. We need to learn to live in his. He CAN’T live in our world like most others. If he were a double amputee, would you deny him mobility and tell him to adapt? If he were deaf, would you deny him hearing aids and tell him to adapt? There were other comments about me as his mother not living in reality and how parents cause autism….blah, blah, blah, the usual ignorant crap (I genuinely can’t think of a better way to state what it is.).

And there, imbedded in all the hate, the words of a colleague who eloquently, but boldly defended good intentions of children with big hearts and championed those who have different abilities. His words read with such resolve. Immediately, I felt less tormented by the criticisms of my children. I have broad shoulders and I am bothered very little by criticisms of me. My torment and pain was on behalf of anyone who struggles and those who care for them and support them with all they have.

I can’t protect my boys forever from such a cold, ignorant and cruel world. I wish I could. I see it every day. I hear comments, I watch how others interact with those with autism, I see the eye rolls. I am inundated by it from folks you would think know better. I know how people feel, they do not hide it well. I feel it. Tommy may be oblivious, but Will is not. I feel his pain, too. He adores his brother. He would walk through fire for him. At some point, his soul will be crushed like mine had that morning. I can’t stop that.

Within a half hour of reading all of that spewed ignorance, another colleague through one quick action was able to have the entire thread removed from the social media page. I’m not sure this person is aware of how just deeply hurt I was and how vulnerable I felt for my children. I also was so grateful to know there are adults who don’t turn a blind eye, they don’t laugh and move on. They do the right thing.

So, in this holiday season, I need those two individuals to know how much I appreciate and cherish their words and actions; they were my heroes that day as a teacher and more as a mother. Thank you, thank you, thank you.

Merry Christmas and Happy New Year! xo

~L

Transitions are Tough…

Today is Tommy’s last day of 3rd grade. This summer he will start at an intermediate school (4th & 5th grade) and then in two short years, he’ll be in middle school. Speaking of middle school, Will is off to middle school in September. As for James, he’s off to kindergarten. All three boys are on the cusp of transitions. Yet, sometimes I think these transitions are tougher on moms (dads, too).

I’ve tried so hard to think back to when I transitioned from 4th to 5th grade. It was 1986. I don’t remember being sad to leave my elementary school. I don’t remember being nervous to start a new school. I do remember Janet Jackson, Peter Gabriel and walking …Like an Egyptian. All these years later I hope I’m projecting my nervousness of the unknown onto Will. But he is so sad to leave his elementary school. He truly has had so many amazingly talented and caring teachers; every single one of them. He’s so happy he and James will share the honor of being a “Bennett Cardinal.” I am, too.

It’s different in Tommy’s case. He’s had some of the same teachers and professionals working with him since he was 3 years old. I have come to rely on their expertise to help navigate “our” intersection of autism and education. School has been relatively smooth sailing for Tom because these folks know what works and what doesn’t. They know how to manage, redirect, teach and enter the world most people aren’t lucky enough to be a part of. They don’t teach subjects, they teach the whole child. They don’t just teach the child, they teach the whole family. I’ll miss them terribly.

Change is good. Tommy will start in July in his new school with new teachers and still some familiar faces. He will continue to be in great hands from the time he is picked up until he’s dropped off back at home. Tommy’s much too literal and unaware to worry about a new school. I’m the one, in all honesty, that’s having trouble with the change.

I’m terrified of Tommy getting older. The challenges for kids in general are so difficult to navigate these days. When you are socially and physically different, it’s amplified. What once was cute can quickly become weird. Stares in public can be tough. Comments in public are worse. My maternal instinct to protect is so acute with Tommy; it’s hard to articulate.

We’ll get through it. We always do. When Eric and I are faced with new medical “stuff” it hits us hard and then it becomes the new norm. This isn’t much different.

I’ve sat on “this side” of the teacher’s desk for over 23 years. Each year I wonder if I did enough. Did I reach every student? Are my students better people for having sat in my classroom? I hope the folks who have worked with Will and Tommy for the past 5 and 6 years respectively know that for our boys, the answer to those questions are a resounding “yes!” Thank you. Freetown Fox and Bennett Cardinal(s) for life!

Goddamnit

A few weeks ago I was sitting down at dinner with the boys and Grandma Jean. I don’t recall where Eric was. Tommy always sits across from me and to my left. James is always immediately to my left. Will, for now, sits at the opposite head of the table between his brothers. I prefer to sit right next to Eric so we can talk without yelling to each other. Believe me, our informal “assigned seats” are not a commentary on hierarchies or power grabs. Grandma Jean was talking with Will. Oblivious, Tommy looked up at me and asked if he could have cookies for dinner. Ummmm, no (he’s on a feeding tube!). “Goddamnit!” I was stunned! Did Tommy just swear and at the dinner table no less?!? Yup, he did. He could tell by my best raised eyebrow and look of incredulity that I was not pleased. I asked him if he knew he just said a bad word. His response: “cookie?” I had to leave the table and go to the kitchen because tears were filling my eyes as laughter overwhelmed me. I was quickly scolded by Will who followed me to the sink. He reminded me that laughing at this behavior just encourages it. As if I didn’t know that, William.

Half of what comes out of Tommy’s mouth is a script. We know this. I haven’t figured out where that script came from, but I suspect YouTube is the culprit. Mea culpa. I know that I have allowed all three boys to spend more time on electronics than I would have preferred. Truth be told, I’m exhausted. This school year, this pandemic has tested me.

Initially, I didn’t mind the isolation that comes along with a pandemic. I still don’t. What I’m struggling with now is having to explain myself and my actions to anyone who does not live the life of a parent of a child with comorbidities. Does autism make you high risk for COVID-19? Absolutely not. Does having a compromised immune system (specifically where you cannot fend off lung infections), high platelets and a cardiac aneurysm make you high risk? You bet it does.

So here we are once again feeling like the world is moving and we are standing still. This time, it has very little to do with autism. Tommy’s medically complicated. He’s under the best care in the world, in my opinion. Eric and I diligently follow the directives from Tommy’s team of pulmonologist, cardiologist, gastroenterologist, neurologist and endocrinologist. Have I forgotten anyone? Millions of vaccines are being administered daily and life is resembling some sort of normalcy for millions of people all over the world. That’s not our reality.

Inherently, by going to work each day, I have an obligation to keep my colleagues and my students safe and by extension, their families. I rely on them to do the same. There simply has not been enough time passed to know the efficacy of the COVID vaccine and what that means to those of us we love and care for who do not have that layer of protection; my son is one of them.

I make no apology for not explaining myself or my husband’s decisions. Eric and I make our decisions together as a team and we operate accordingly. Outside of Eric, I have to place a great deal of blind trust in others. I simply cannot take the risk of having Tommy exposed to this virus and the potentially life threatening or life long effects of it. It’s just that simple.

I’ve found myself somewhat in a rut the past few weeks. I got in a bad habit of trying to catnap after school. I’m hiding. I know myself well enough to know I’m hiding. I can only spin so many plates before they start to fall and smash. The biggest plate for us right now is not autism, it’s immune systems, platelets, and aneurysms.

Over the past week, I’ve been forcing myself to run. Sometimes I can get up early enough to do it before work at 4:30 am. Other days it’s after dinner. Last night, it was 8pm and Will decided to come along for the run. I’m so glad he did. He’s very intuitive. He’s also out of running shape. What happened to the kid who runs 5Ks? When we got back to the house last night, for the first time in a long time, I beat him in a sprint up the driveway. It felt amazing.

“Goddamnit, huh Will?” This time instead of admonishing me, Will and I grabbed a step on the porch and high-fived and laughed. For now, he can keep my seat at the opposite head of the table and I’ll keep spinning my plates.

April Fools’

We’re now a few days into the month of April. International Autism Awareness Day 2021 has come and gone. I didn’t miss it (how could I?). I just wasn’t feeling it much this year. I would venture to guess that I’m not the only mother of a child on the spectrum who was just not feeling like “Lighting it up Blue.”

We postponed April Fools’ Day this year in our house. Instead of engaging in tomfoolery and trickery on the 1st, we decided to celebrate April Fools’ on Easter Sunday. It’s complicated, don’t ask. In any event, my three, no four, boys have been talking about pranks for months. In many ways, April Fools’ has ranked up there with Halloween and Christmas. I kid you not.

Tommy has been riled up about pranks and pranking. He wanted teams this year. It was to be Dad and Tom against Mom, Will and James. First of all, I’m the master at pranks. This division of teams seemed lopsided and unfair. I opted to bow out. I wasn’t feeling April Fools’ Day, either. However, listening to the three boys and Eric trade quips about master schemes brought endless smiles. They all make me laugh.

A few days ago, I asked Tommy what a prank was. He looked at me with those deep big brown eyes and said, “I don’t know.” Hmmm. How would he play a prank if he didn’t know what it was? Tommy is way too literal for this kind of out of the box, nuanced sort of thinking. Let me give you a few examples.

A few weeks ago, Eric got up from his chair at the dining room table. We had been playing cards. As he walked out of the dining room, Tom Bomb was walking in. Eric told him to keep his seat warm. Tommy ran to the living room to retrieve a blanket from a basket in the corner and then back to put it on Eric’s chair. I asked what in the world he was doing. He said “Dad said to keep his chair warm.” Tommy was looking at me incredulously. Fair enough.

A few days after that, my mother told Tommy to give her a break (in a jocular way), he turned to me and whispered “I don’t want to hurt her!” You’re right Tommy, breaking her would absolutely hurt her.

I couldn’t imagine how Tom could possibly come up with a prank on his own. However, Saturday evening, the doorbell rang. Eric and I thought “who the hell is that?!?” Anyone who knows us knows we are on lockdown. When Eric opened the front door, it was Tommy standing on the front porch stimming, arms flapping and all. “April Fools’!” He managed to get us! Was it the prank of the century? Nope, it wasn’t. But it was a sign of growth and progress.

Maybe I wasn’t as anti-holiday this April as I thought I was. In fact, I did wear an autism “Choose Kindness and Acceptance” shirt to work on Thursday (no school on Friday, the 2nd) even though hardly anyone noticed it. I wore blue while golfing on Friday (in 31 degree weather). I’m aware all the time. I’m also grinning ear to ear thinking of how perfectly awesome Thomas Paul is and how lucky I am to be his Mom, no fooling.

So thankful, but what’s in your wallet?!?

Today started out like most weekend days or the days of COVID lockdown. At 5:30 am, Tommy was standing beside my bed waiting for me to startle. This morning, he greeted with me with a very flat “Happy Thanksgiving” rather than the usual “Mom, I’m awake.” I told Tommy he could go downstairs to watch tv or play in his room, but I was going back to sleep. From 5:30-8:00 am, Tommy returned every 20 minutes to ask me if I were getting up. Tommy NEVER asks if I’m getting up. He has no interest in my morning routine, especially where he has a strong aversion to coffee and coffee is essential to my mere existence.

By 8 am, I realized that last night, I told the boys they were not to play any video games (which they can only play on weekends, but it’s Thanksgiving, so I caved) until I got up. That’s why Tommy was wishing me a Happy Thanksgiving and nagging me to get out of bed! I should have known. I capitulated; I gave the boys the go-ahead to use their Switches. But for the record, I can’t hear about Mario, Luigi or Bowser anymore. I’m saturated.

I know this Thanksgiving was much different than years past for so many families. Yet, we have so much to be thankful for; I know I do. This year has certainly been one for the books. As I reflect, I’m so very grateful for the time I got to spend with my husband and children while I worked from home until this September. As I look back, perhaps it was all the time I spent with my sons that made my spider-sense super in tune to Tommy.

Beginning in June, I began to get a nagging feeling that something just wasn’t right with Tommy. I couldn’t articulate what I was feeling. By the end of the month, I started to think he looked different. I asked his teachers if they noticed anything different. They did not. I chalked it up to only seeing him via Zoom.

In July, I started to express my concerns to his medical team at MGH. They were laser focused on Tom’s compromised immune system amidst a pandemic. My concerns didn’t fall on deaf ears, but Tommy’s immune deficiencies were far more pressing than my gut instincts and perceived changes. Perhaps I was starting to go a little stir crazy being stuck at home all these weeks. Nah, my gut kept telling me otherwise.

By August it was apparent that Tommy was losing weight despite his high calorie g-tube diet. He also was not growing in height. He was exhausted all the time and didn’t have the stamina to keep up with his brothers. Mid-month, he had his first in-person appointment since January. Immediately, his doctor noticed Tommy looked different. I knew it!! I just didn’t know what it was.

What we now know, after a long autumn of testing and more specialists, is that Tommy has an ascending aortic aneurysm. We’re still in the testing phase before a decision is made about treatment. Cardiac conditions coupled with immune deficiencies in the context of coronavirus is cause for worry. When it pertains to a nine year old autistic boy, it’s frightening.

Despite all of this, I’m so thankful for the hellish year 2020 has been. My parents have dropped everything to support and help us. My two brothers have each been rock solid support in their own ways. I have the most amazing partner in Eric. But once again, it’s the frontline medical staff at MGHfC that are my real heroes. They’ve gone through hell over the last 9 months. Some of the stories they’ve told are harrowing and heartbreaking. I’m in awe of them and their selflessness. I’m also relying on them.

Today, at dinner, Will wanted each of us to share what we are most thankful for. When it was my turn, I told them I was thankful for good health and all the love I feel from friends and family. It was cheesy and a cop-out. I simply didn’t have the strength to speak my heart in that moment.

I found myself staring at Tommy most of dinner. He has been able to tolerate plain baked chicken in addition to his elemental formula (believe me, I thought for a time the chicken was the culprit in his recent spiral- his doctors entertained that idea, too). He seemed to be a thousand miles away and deep in thought. It didn’t take long to know what he was thinking about.

Earlier in the day, as I was elbow deep in a turkey, Tommy asked me to purchase a mod to upgrade his Super Mario Smash Bros. game. I told him it was $5.99 and you needed a credit card, he’d have to talk to Dad. As Tommy walked away, he told me he saw Santa in a credit card commercial on tv (the one with John Travolta and Samuel Jackson, I presumed). Tommy also doesn’t say things just once. He says what he has to say, and then he repeats it once or twice, or four times, to himself as he stims.

Later, just after dinner, Tommy asked what you get when you have a “5, a period, and two 9s.” I was doing dishes, but I knew where he was going. No one responded. Shortly thereafter, Tommy returned to tell us what the mod for his game required. Again, no response. And then, as innocent as can be, Tommy said he was asking Santa for a credit this year so he can swipe when he needs something. I lost it. After all the stress and worry, that laugh was much needed. Tommy stood there straight-faced and perplexed as to why we were guffawing so heartedly.

I love him and I’m so thankful for him, his brothers, Eric and everyone who is part of our village. I’m also so immeasurably thankful for some of the world’s most brilliant doctors not too far from us in the medical capital of the world. They work tirelessly, but this year has been extraordinary. I wonder if they know how grateful so many of us are for their expertise and efforts.

Wishing you all many blessings and a very happy and healthy holiday season.

Xoxo

P.S. What’s in your wallet? (I dare you to not think of Tommy the next time you see that commercial.)

Nine

Today, our Tommy Pickles turns nine years old. Part of me wonders where the time went. Part of me thinks he’s aged me 9 years…in dog years.

On this ninth birthday, Tommy still can’t eat cake. Someday I hope he can! Instead, he’s excited to have treasure hunts to look for his gifts and is hoping those gifts include anything Mario Bros., planets or maps. Speaking of maps, he’s newly obsessed with electoral maps.

Over this last year, in November, Tommy took a day trip to NYC to see the Radio City Hall Rockettes’ Christmas Spectacular. He loved the numbers in the 12 Days of Christmas and still talks about it almost daily. In December, he started back at Special Olympics. He continued his First Communion class and subsequently started leading us all in prayer each night at dinner (does he know us at all?!?) just so he can shout “dig in everyone.”

When COVID hit, Tom adjusted to remote learning. Fortunately, he has the best of the best teachers and support staff and his transition was relatively smooth. He also took the opportunity to learn to ride his bicycle with training wheels. That’s a huge milestone for him.

By summer, Tommy insisted he could swim without a life jacket or our help. He swore his school taught him to swim. Turns out, he can swim, but only just a short distance until he’s zapped of all energy. None the less, Tommy loved being home with his brothers in isolation and doing what he loves: swimming, swings, video games and playing with his planets. I loved the time with all three boys; silver linings.

Not a day goes by that Tommy doesn’t lament how much “coronavirus ruined everything!” we cancelled our annual Disney trips. Even more of a disappointment, we cancelled our long awaited family reunion cruise in the Caribbean. Tommy wants so badly to travel to different countries! Trips come and go. I’m sure we would have made great memories, but we have made great memories right here at home.

In September, Tommy and William made their First Communion. We kept William back so they could work together and I’m glad we did. School also resumed for T. His program is small and vigilant, so our worries are small regarding COVID.

Halloween was almost non-existent. That’s usually Tommy’s time to show off his one-of-a-kind costumes. This year, he wanted to be a toilet. In the context of 2020, it seemed appropriate. I hadn’t gotten out of the design stage before Tommy changed his mind and asked to be Wario. So, Wario he was, even if it was just at home with his bros: Mario and Luigi.

All in all, it’s been a great year. We’re looking forward to nine. I’m not sure what the next 365 will hold, but I know it won’t skimp on love, laughter, meltdowns, planet talk, Wario, stimming, and AFV.

Happy Birthday, Thomas. You have my heart forever.

To the Dads We Know of Children with Autism

I tend to spend a good portion of my days reading. I read newspapers not only from all over the country, but from all over the world. I like perspective. When I want to know something about any given topic, I try to read as much as possible. Naturally, I read ferociously about autism, as well every other diagnosis that has been made regarding Tommy. Last week, I met with several physicians from Mass General Hospital for Children from both immunology and pulmonary. We talked in-depth about COVID-19, immunodeficiencies, and of course, Tommy watching the Space X launch the previous Saturday. One of the doctors suggested several peer-reviewed articles to read regarding the research they are doing right here in Boston pertaining to COVID-19 and the inflammatory disease afflicting some children. It sent me down a rabbit hole…what else is new? That discussion and the reading afterward made my heart hurt for the mothers and fathers of the children who have been ill (fortunately, all of the children at MGHfC recovered and went home, but not without putting up one hell of a fight).

I found myself reading off topic to distract myself from the anguish. I started reading peer-reviewed articles published by The National Institutes of Health regarding fathers and autism. A study published in 2017 entitled “The Experiences of Fathers Who Have Offspring with Autism Spectrum Disorder” caught my attention. Tomorrow’s Father’s Day, so I figured I’d share a few of my thoughts in honor of the day.

First, I’ve noticed that most articles published or even websites on autism tend to be from a mother’s perspective or written with a motherly audience in mind. That doesn’t seem fair. I’d like to think I do all the work, but I don’t. In fact, the fathers I know who have children with ASD, including my husband, share the load with their spouses. They are at Special Olympics jumping in when meltdowns are erupting. They literally jump in the pool at birthday parties because even as our children are nearing double digits in some cases, swimming is not only an overload, it’s dangerous. They follow their sons and daughters off into directions away from other party-goers or guests. They coach t-ball teams. They carry their kids to bed, still. They talk about the Milky Way galaxy colliding with the Andromeda galaxy in a few billion years. They drive their kids to NASA to watch them in pure glee stare at all things space. They build swing-sets and trampolines to indulge in whatever it is that makes their precious child happy. Some of the things Eric just does may be because I don’t want to, but most things he does is because he’s great at it.

One of my least favorite things to do is to meet with neuropsychologists and psychiatrists, which almost all children with ASD meet with at least once every year or two. I also have a very difficult time with IEP meetings and school Family Meetings. Don’t get me wrong, every professional who works with Tommy at his school is dynamite. But I still wrestle with my heart and head not matching up. I know this is not my fault. I will always feel like it is. That’s incredibly difficult to admit. Eric is phenomenal in those meetings. I’m always in awe of Eric’s advocacy of not only our son, but on behalf of all children with special needs, whatever those needs are.

Back to the NIH article- the findings of the study I read indicated that research exploring parents’ experiences of having children with autism underrepresents fathers. There isn’t enough research and data to date to explain why. However, what research has shown, is that fathers report very similar experiences as mothers. After I read the findings, I went back to the article to re-read some of the responses participating fathers gave. Each of the responses were so raw with emotion, fears and complete honesty. Sometimes I think I think and feel too much, especially when it comes to Tommy. Turns out, the way I feel is perhaps the only thing that isn’t atypical about all of this (side note: if you haven’t watched Atypical on Netflix…get on it).

My point is this, research can tell us that mothers and fathers have similar experiences, they have similar worries, heartaches, stresses and even joys. That’s all well and good. But I don’t need an article to tell me what I already know. The Dads of kids with autism that I know are Super-Heroes. For each of these kids in my life, when he or she looks into their Dad’s eyes, that thousand mile stare briefly goes away and they absolutely light up. They see the Super-Hero, too.

Happy Father’s Day to the Super-Hero Dads in my very small autism inner circle.

Cut me some slack, this is my first pandemic!

Tomorrow’s the last day of Autism Awareness month. I haven’t posted in weeks. It’s not that I didn’t want to, it’s just that there’s so much to say and so much going on in everyone’s lives. I suspect each one of you is also having trouble articulating thoughts and feelings. For me, the feeling of anxiety and worry comes in waves. This weather does not help. And let’s face it, this is the first pandemic we’ve all been through; I’m not even sure what to think, feel and do. It’s made me want to keep to myself.

Putting all of those feelings aside, I’ve also been filled with laughs, pride, and admiration. As I type this, I’m sitting across the table from Tommy who is in the midst of his Speech group via Zoom. If you were sitting here with me, you could look around our dining room and see academic schedules posted on the walls, social stories taped to a chalkboard easel, schedules to velcro routines to, work routines stare as reminders of expectations, and laptops are sprawled across the table. It’s overwhelming. It’s overwhelming to me, but it’s so comforting and grounding to Tommy. I would be remiss if I did not tell you that I did not create a single “tool” used here to homeschool Tommy Pickles. The staff at the Collaborative where he attends school is absolutely nothing short of amazing. They have called, Zoomed, emailed, consulted and dropped off everything needed to bridge this unprecedented isolation and the life we knew just a few months ago. He hasn’t missed a single service, be it speech, OT, counseling, academics, physical education; amazing.

Eric and I weren’t quite aware of the extent to which Tommy was missing his routine until last week, when I heard him saying “hello” repeatedly from the playroom. I knew he had been working on Nintendo Wii incessantly for a few days, but I assumed he was boxing, bicycling or playing baseball against the computer. That’s what my other two spies reported, anyway. As it turned out, that’s not quite what he was doing all of those hours in solitude. Tommy obviously spent a great deal of time creating a Mii (Nintendo version of an avatar) for each of his teachers, therapists, nurse, classmates and yes, even George. If you’re familiar with Wii, you know there is a “lobby” where Miis gather before a game is selected. Tommy found great comfort in sitting on the couch greeting each friend from a lost routine as they appeared across the screen. When I walked in, there he sat waving and stimming with so much joy.

It was amazing to me to “see” Tommy’s perceptions of the people who are so crucial to his daily life. For the most part, the Miis look very similar to their real life counterparts. I was pleased he sees me slimmer than I am, that’s 10 credits for you, my friend! The Mii Tommy created for himself is black, bald and wears glasses. When asked, Tommy is adamant that’s what he looks like. It was also amazing, and perhaps astonishing, just how much Tommy was struggling with this “zig zag” to his daily life. He craves order. He isn’t able to articulate what he’s thinking or feeling, it spills out in asteroid facts and Nintendo characters. I wish I understood his world and how it operates.

There’s also been a significant uptick in the running scrip Tom has in his head. Any interruption to that visibly makes him upset. The moment he can, he’s right back to the script. One would think he’s talking to himself. Tommy doesn’t really talk to anyone nor is he creative in dialogue. For example, I overheard him playing with Mr. and Mrs. Potato Head in his room. “It’s so nice to see two people in love!” At face value, awwwww. I know better, it’s a line from a Pixar short on Disney Plus, “Forky Asks a Question.”

We’ve also had plenty of moments I will treasure. I would not have them if we weren’t at home through all of this. We’ve laughed until we’ve cried, we’ve painted rocks, made chalk drawings to brighten people’s days, played soccer and baseball, watched movies, and ridden bikes. As the weather warms, there’s so much more for us to explore together.

Occasionally, a wave of emotions will unexpectedly hit me. I cried when Tommy’s shipment of pull-ups arrived from a medical supply company. He’s 8, it’s hard. I panicked momentarily when his feeding tube formula was delayed in shipping due to work shortages. And I break out in hives each time get a phone call from his critical care team at MGH that are just checking in to see how Tommy’s doing, along with the rest of us. My “Mom Tribe” has validated what I’m feeling (regression, isolation, frustration) without even having to articulate it. I’m so thankful for them.

I’m not sure what the next few months will bring not only for our family, the people most important to us in our lives, or even the world. But what I do know is that this time has reminded me once again how very lucky Eric and I are to have Tommy as our son. He has brought some of the most amazing people into our lives through their work with him. We truly could not be any more grateful.

Sidenote: Since Eric colored my grey roots (fret not, we used salon grade hair color not the boxed shelf stuff), Tommy has changed my hair color in Wii.

Season 8, Episode 1 – Asteroid Apocalypse: The New Threat

What a week. Working from home is not easy. There are probably millions of people who do it outside of the current pandemic, in some variation, but it’s not for me. It’s especially difficult when you have three kids, and one of them is Tommy. I’ll give James his credit, too, but he knows how to hide when he’s being mischievous. Naturally, I don’t see him much when I’m sitting at the dining room table, which has now become the homeschooling command center.

Can I interject to tell you how much I hate virtual meetings? I’m going to anyway. When I’m at work, I honestly don’t give a second thought to the issues that have suddenly made me paranoid and self-conscious. I don’t move about my classroom awkwardly, I’m not worried that I have a rogue chin hair, I can’t see my facial expressions and try to overcompensate for not hiding them, I’m not worried about my eyes looking too big with my glasses on, I’m not looking for the perfect angle so it doesn’t look like I have 4,284 chins… It’s exhausting. I miss half of what’s going on because I’m distracted by me. And when I’m not, I’m actively trying not to notice colleague’s backgrounds. I’ve learned quickly that I need to just shut them off. Sorry. It’s not you, it’s me.

Eric and I started the week with a check-in from Tommy’s school and their outside consults. We, at 10 am, accurately reported that we had everything under control. By the way, I had to sit away from the laptop. I used facial lotion and couldn’t get over my own glare. By that afternoon, any sense of control of any situation Eric and I thought we had, was loooong gone.

We’ve been noticing that Tom’s way of retreating this past month has been to watch “How the Universe Works.” It’s a preferred topic. He remembers every line of every episode and that makes it predictable. Predictability and routine are comforting. He stims so much when it’s on that he sweats, a lot. When he asks to go to the playroom to watch it by himself, we let him. It’s his way of self-soothing. He can’t tell us what’s going on, but retreating is his way of saying he needs a break. Here, here’s the remote, T.

By Monday afternoon, Tommy couldn’t even self-soothe by playing with his planets or watching his show. Everything that went awry over the past three days in his world were the catalyst for a major fight with his siblings. Fight after fight after fight. Tom’s added a new element: blame. I’m not quite sure what happened while the boys were playing outside, but I do know I’ve never seen Will lose his sh*t before. He did on Monday. It was painful to watch. After I picked my own jaw up off the front porch, I went in the house, changed and took Will on an 8 mile bike ride to my mother’s house. She’s Will’s favorite. She makes everything better.

On Tuesday, my mother took the boys to her house to sleep. She’s part of the quarantine plan. We only interact with each other and otherwise are on lockdown from the outside world. By Wednesday, I had to reach out to Tommy’s teachers. I went to see the boys and work with Tommy on his schoolwork at Mom’s house. A simple emotions “check-in” in Google Classroom set him off. He was gouging at his eyes, screaming, and jumping up and down. Then, as if nothing happened, he clicked he was “happy.” Uh, no. Actually, Tom, you’re not. I told him to change it. Round two! Ding! Ding!

On Thursday morning, that’s right…still at my mother’s, I picked Tommy up and brought him home. He ZOOMed with his teacher and speech therapist. They chatted, read a Curious George story about Easter Eggs and then colored Easter Eggs. Tommy seemed to be himself, thank goodness. I dropped him back to mom’s. Today, (I know, don’t judge…) Eric picked Tommy up to go for a “ride.” They did some highway driving and Tom did some singing.

Everyone’s routine has been turned upside down these past few weeks. There’s no denying that. But when you’re autistic, the emotions neurotypical folks are feeling now can be the norm. Think about that. It seems next to impossible to find Tommy’s routine for him. He needs some of the familiarity of life before quarantine. He’s missing George, badly. He’s missing his teachers, his classmates, and his ROUTINE. ZOOMing with his teachers helped him recognize familiar faces, voices, inflections, schedules. Highway driving did the same. It turns out, he’s missed his Monday night rides with Dad just as much as Dad.

My kit kats will be home in the morning and I’m ready. What have I done these past four days? We’ve finished painting all the main rooms of the house. I’ve done my spring cleaning. I prepped for remote learning. And I’ve helped some of the bigger kids in my life. Turns out, Tommy’s not the only student missing school routines.

SIDEBAR: Am I the only one having trouble sleeping since this quarantine began?

Tom’s sudden interest in dinosaurs is directly related to asteroids. According to Tommy, an asteroid hit the Gulf of Mexico 65 million years ago, killing the dinosaurs.

Fifteen Two, Fifteen Four, and a Pair…

Tonight was movie night at our house. Thank goodness for Disney+ right now! We watched WALL-E. Truthfully, everyone else watched WALL-E while I worked and I then joined in for the last few minutes. I could hear the commentary from where I was working in the dining room, mostly from Tommy. He often has to ask why someone said what they said or how they are feeling. It’s very difficult for him to infer. He’s been taught emotions, but he doesn’t always understand them. I really do love watching movies with him; he seems so innocent.

After everyone was tucked in bed, Eric and I played cribbage for a bit. I don’t care for the game, but I always love the conversations. This is probably true for anyone who plays cribbage, rummy, or any other card game with another person. You have some of your best conversations over a deck of 52.

Tonight I asked Eric what he was finding most difficult about being home during this pandemic. He said he genuinely misses his Monday night trips to Hanover for Tommy’s occupational therapy sessions. We played a few hands and then I asked why. Eric went on to explain that he feels like it’s his only real time with Tom. I grinned ear to ear. I knew what he meant, no further explanation needed.

Tommy isn’t warm and fuzzy. He often doesn’t show affection unless prompted to do so. He’s not one to hug and kiss and he certainly isn’t interested in your day. On Monday night car rides to OT with Eric, and Eric only, Tommy sings from our house until they arrive at their destination over an hour later. There are songs about the solar system, Jupiter, the alphabet, the Three Little Pigs, the states. He doesn’t take requests. There’s an order to his songs and he knows which songs make Eric laugh. Laughing is good, right Mom? Strangely, Tommy only sings in the car with Eric and sometimes his van driver, George. I have never heard his songs and the sheer delight it brings him. When I drive Tommy to MGH, or the Lurie Center and sometimes OT, he is almost always silent. He’ll stare out the window and occasionally tell me a fact about Jupiter, a star, black holes, or the sun. I never hear him sing. Yet with Eric and sometimes George, he sings the entire duration of the ride. I don’t get it, but I try not to let it hurt my feelings.

While I was whooping Eric at cribbage, he commented that he loves how animated Tom gets when he starts talking about a preferred topic (most of the time); arms are flapping and he speaks so fast it’s difficult to keep up. His comment instantly made me think of a documentary I watched last night (well, actually, it was very early this morning…I’ve been having great difficulty sleeping in the last few weeks) called “The Rainman Twins.” It’s about two women now in their sixties, Katherine and Florence Lyman, who are the world’s only known identical autistic savant twins. Tommy’s certainly not a savant, but there were parts of this documentary I identified with for sure. These two women are hysterical, charming, smart, and just pure. At one point in the documentary, a neuropsychologist spoke about how so little was known about autism in the 1950s when these women were little girls. The condition was often attributed to their mother’s and their cold treatment of their children. I can understand how one would think that. If you didn’t know me or know Tom, you’d think we had cold interactions. Maybe that’s not it, just different interactions than say Will or James and me. It’s really tough as a mother, you can’t understand unless you’re in the position. There are days that it breaks my heart.

After I beat Eric in cards, he agreed to watch the documentary. If you know Eric, he’s a tough critic. He loved it and he loved Kay and Flo….what a pair! If you have Amazon Prime, watch it. I promise you won’t be disappointed.

Wanna Hear a Confession?

Last year, Tommy started CCD. I know that’s not the term for it now, but as a product of the 80s, it’ll always be CCD to me. I know I’m not the only one on this. Faith Formation! That’s it. Tommy started last year… home schooled. By spring, he tried going to classes, and it went pretty well (as far as I know). Here’s the thing, I kept Will back a year in CCD (sorry, Faith Formation) so that the boys could do it together. They’d receive their First Communion and then, hopefully, Confirmation together. I’m being pragmatic here, Tom is not an entity you necessarily want to take on yourself and Will makes a pretty good buffer. Bless his heart.

This year, the two boys are in 2nd grade Faith Formation classes. Do you know what that means? First Communion. Yup, that’s a whole lot for a kid on the spectrum who thinks in the concrete, not the abstract. So far, it has gone really well with the exception of the two squabble/fist fights Will and Tom had during class. The Lord is watching. From all accounts, Tommy gets very uncomfortable and needs his brother to lean on, to rub his head, and to sit up-close and personal. I don’t blame Will for getting annoyed. A role has been thrust upon him that quite honestly should be mine. Bless his heart.

Overall, things have gone swimmingly this year. Then, March hit. The boys had to make their first penance (aka confession). Did you just slap your forehead? I did the first time I realized Tommy had to go to confession. He just doesn’t understand. Thankfully, the best of the best run the Faith Formation program where the boys go to Mass; they know. Tommy was prepped for weeks about First Holy Penance. On a particular Saturday morning a few weeks back, there would be a small prayer in the main church, a small skit and then confession. Holy smokes…I had to brace myself. Being Tommy’s mother has not always been easy and he forgets nothing. All bets were off for this event. I thought if I brought James with me, between he and Will, I wouldn’t look so bad as a parent.

Much to my surprise, Tommy got to be the Shepard in the small skit the First Communion class performed in front of all 10 sets of parent. Will got to be the wayward sheep. It was cute. Still, I held my breath. Tommy is an unknown variable. Then the boys got to take a small sheep to “pin” on a pasture that would remain on display until their First Communion in May. That’s not happening due to COVID-19.

So far so good. James was behaving like an angel. It was like he knew his role that morning and he was playing the part; good boy! After several students took their turn confessing their sins to Father, it was Tommy’s turn. Sheer panic set in. He was handed an envelope and off to the side altar he went to make peace with sins he’s committed. Meanwhile, I broke out in hives. I think Will did, too. Will looked more nervous than I did. Everyone could see the look on Father’s face, which wasn’t one of horror. To be honest, the whole ordeal, if you can call it that , was over in a few minutes. Off Tommy shuffled to place his sheep bearing his name next to the other sheep on the large display. Then, it was Will’s turn. Shame on me, I didn’t even pay attention. I figured Will would pretty close to have to lie to tell a sin and then confess that he just lied.

After Will placed his sheep on the display board, Tommy’s high pitched voice that echoed in that large church asked if he could move his sheep. His teacher obliged and Tommy quickly climbed onto the altar to move his sheep next to Will’s. There weren’t many folks there, but those who noticed quickly did the “awwwww” with a hand on their heart. You couldn’t help but melt. Tommy loves Will, but he also needs Will. Bless Will’s heart.

When all was said and done, pictures were taken and coats were donned, Father came over to me. I could feel my hives coming back. He handed me an envelope. In the envelope was an index card Tommy was given the Sunday prior. He could write down his sins and place it in the sealed envelope just in case he forgot when it came time for Penance.

I felt my heart skip a few beats. When I took the card out of the envelope, there, in Tommy’s terrible handwriting were five, FIVE, complaints he had with other people. He confessed OTHER PEOPLE’S sins!!! Instantly, and maybe shamefully, I was relived I didn’t make his list. In the next breath, I was horrified! Who topped his list you ask? Do you really need to ask? It was James. The next four sins were committed by peers outside of our family. I told you- he doesn’t get it. Father gave me a wink as he chuckled. He pat me on the back and told me that made his week. Ummm, we’re all God’s children, right?

So let it be a lesson to us all, Tommy’s paying attention and he’s taking names. He’ll dime you out in a second. I’ll pray for him, he’ll pray for you…whatever that means! Bless his heart.

Autism? We hardly noticed.

Today kicks off another April of Autism Awareness.  We hardly noticed in our house…just kidding.  When school was cancelled for initially a week mid-way into March, I cried.  The news came late in the afternoon as I was getting my lid did; closing school was the right call and it had to happen.  On my drive home with freshly colored roots, I shed a few tears behind the privacy of my windshield (the kind no one ever sees anyone else belting tunes or picking their nose behind).

First, I was scared.  I still am.  My brother works in China.  As early as New Years’, he was sending us messages about this devastating virus.  He urged us to stock up on sanitizer and masks if we could.  The photos he messaged were a harrowing glimpse of what was to come.  He kept telling us it was not a matter of if, but when.  I could not fully understand the magnitude of COVID-19 until March.  It’s here in America and it is wreaking havoc.

Tommy is immunocompromised. His body is not able to fight a respiratory virus.  There is a plan in place with his critical care team at MGH should he show signs of symptoms.  We’re in contact every few days.  Other than going on lockdown in our home and following all the guidelines set forth by the CDC and social distancing to flatten the curve, there isn’t much more we can do.  None of that helps a scared mother turn off her overactive brain.

I also felt sad for my students.  As a teacher, students undoubtedly become a part of your life, good and bad.  You worry about them, their education, their emotional well-being and of course, their safety.  Now that schools in Massachusetts are closed until at least May 4th, I feel worse.  I feel as though I’ve been robbed.

Lastly, I shed some tears for the students, friends, and for me who have someone in our lives who just had the rug pulled out from underneath them.  Autism services that are so critical for success for many such as OT, Speech, ABA abruptly ended.  Routines have been turned on their heads.  Parents of children on the spectrum often can’t wear many hats: parent, SLP, OT, PT, caregiver, teacher, or counselor.  They may be equipped (bless their hearts if they are), but the child who thinks in concrete terms are not.  They can’t understand the multiple roles.

So here we are, April 1st, almost three weeks into our quarantine.  We are navigating establishing routines, working through curriculum, reaching out to classmates, students and other teachers.  On paper, it’s not that different from any other parent with school age children.  In reality, it’s so very different.  Once again, like most parents I know who have a child with autism, I feel so completely isolated.  Sharing your frustration, heartache, and fears are fleeting to the listener.  We tend to keep it to ourselves.  I have continued praise of Tommy’s teachers and support staff who check-in daily.  They are helping us make this time apart less isolating and confusing.  We’ll try to keep regressions to a minimum if we can.

If you know someone who is either dealing with a disability or a medical condition or their caregiver, check in on them.  They’re probably not okay, if even they tell you they are.

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Tommy participating in his school speech group via Zoom.  #SCECareinittogether  #teachersmatter

 

Shapes…and a teacher that was one in a million

For the last ten out of 22 years, I’ve been teaching in the classroom that was once my eighth grade Reading classroom when I was a student Parker Middle School (it was A209 thirty years ago). Each day as I walk in and turn on the lights, I’m briefly reminded of the remarkable woman who taught in that room all those years ago. She and I have been in touch over the years. She has undoubtedly been one of the formidable women who has helped to shape me into the woman I am today.

For years we talked about teaching and education. I’ve tried to emulate her style. Often, teaching goes far beyond the classroom and lessons extend far beyond the prescribed curriculum.

On the day I got married, the very first person I saw as I walked into the church, was her. I hadn’t invited her (which I deeply regret), but I was so happy she crashed. She said she wouldn’t have missed it for the world. I’m sure there are dozens of other weddings she’s crashed and they’re probably all as equally grateful she did.

It was she who first took me to the Kennedy Library to listen to a lecture; I have since frequented them. The lecture she brought me to was Secretary Madeline Albright. Through her confidence, we were able to meet Madame Secretary that evening and chat. That was almost 20 years ago. Since then, I make it a point to branch out far beyond the Kennedy Library: Anita Hill, Joe Biden, Bill Clinton, Jane Fonda, Hillary Clinton, Gloria Steinem…I could go on.

After Tommy was born, our conversations changed, dramatically. For so long, we talked about books, writers, traveling, influences. For the first time, we chatted about being mothers. And by chatted, I mean she cheered me on from behind the scenes. If you have had the honor of having this woman as a teacher, you know what I mean. Whenever you doubted yourself, she was behind you nudging you…no…forcefully reminding you how strong you are and how capable you are. When I thought I couldn’t, and trust, there have many times I thought I couldn’t, she insisted I could.

That first summer of Tommy’s life when he spent so many weeks in the hospital, I always could count on a message or a phone call from her with words of encouragement; woman to woman, mother to mother. She scoured journal articles to help shed some light on the new world in which I found myself.

As Tommy got older and then diagnosed with Autism, she continued to remind me that I was doing all of the right things and fighting the right fights. She continued to scour for articles that may have been helpful.

Perhaps the best lesson I learned from her was that we all fail. It’s okay to fail. But you have to pick yourself up and keep moving. She also taught us to celebrate everything; no accomplishment was small. I’ve never quite met anyone else like her. She was tough, she had the highest standards, she was your strongest advocate, she saw your strengths, and she was always a lady.

I’m genuinely grappling with the right words to express what such a mentor could mean to me as a student, a colleague, and mother over these last three decades. The last few years for her were not easy, but she still, right up until fairly recently, managed to send me a message just when I needed it most.

I’m so very heartbroken to learn of her passing. I hope she knows how much she was loved by so many; a love she showed us all as kids and followed us through to adulthood. She was the best kind of teacher. Thank you, Mrs. Yafrate, for shaping so many of us.

Crazy 8

Tomorrow is Tommy’s 8th birthday!  I can hardly believe it.  Tonight, Tom had OT and Eric took him.  When they left the house, Will, James and I hopped in the car and headed to Party City.  Tommy is primarily fed via g-tube (feeding tube) and doesn’t eat birthday cake; he never has.  In fact, he hasn’t eaten much food outside of his tube feedings due to a rare protein intolerance and an immune system deficiency.   I’m not sure it bothers him, but if it did, he wouldn’t necessarily have the expressive language to tell me.  I think it bothers Will a great deal and probably why he insisted we go buy party supplies to fill in the gaps.

We burst into Party City just as it was getting dark AT 4:30PM (I hate daylight savings) where we picked out Mario pencils, mustaches, streamers and Mario balloons.  James sounded like one of the aliens from Toy Story as he walked up and down the birthday aisle.  “Oooooooooo.”  He was absolutely no help.  I let Will pick out whatever he wanted.  Just to let you in on a secret, Mario is Will’s favorite, not Tommy’s.  $6.29 later (he’s frugal) and we were on our way.  There is no school tomorrow for students due to the elections, but teachers have a professional day and therefore I have work.  Will intends to decorate while he is home.  I told him to dust while he was decorating.  We’ll see if he does, he probably will.

While we were in party planning mode, Will had so many questions about the night Tommy was born.  The two boys are thirteen months apart to the day.  Will acts like he should remember that day, but for some reason can’t.  I laughed throughout his interrogation, but I was very vague in my answers.  But here’s what actually happened: Eight years ago tonight, I went to bed around 10pm and had one, ONE, contraction a half hour later.  I sounded the alarm!!!  Get Will from his crib! Call my mother! Grab my hospital bag! It was time.  I had ONE contraction.  Eric drove like a madman to the hospital.  If you knew how it all went down with Will (born 6 weeks premature), you’d understand why I may have slightly over-reacted this particular night.  I slightly over-reacted.

Just before midnight, after being hooked up to monitors that track contractions and the like, a nurse came in the room to tell me I wasn’t in labor.  I asked her to give me five minutes.  We were watching….I was watching SNL.  I didn’t want to go home just yet.  Eric was obviously annoyed with me.  If you know him, you know the look.  It’s piercing.  He asked me what made me think I was in labor.  I tried to explain to him that I had one contraction and a burning pain in my middle toe on my right foot.  He flipped.  “I’M PRETTY SURE THAT’S NOT WHERE YOU’D HAVE PAIN!!!!”  Rude.  How would he know?!?!?  I’ll admit it, sometimes I’m Lucy to his Ricky Ricardo.

What I didn’t and couldn’t tell Eric was that I had a dream, quite vividly, not long before that night about my Uncle Paul who had long since passed.  In my dream, Uncle Paul told me that he would let me know it was “time” ahead of time so that I wouldn’t go through what I did with Will (almost delivering a baby in my classroom).  I would have pain in my toe and that’s how I’d know.  It was just a silly dream.  So when I had pain in my toe that night, I couldn’t risk it!  Crazy, right?  Just as I was about to get the boot from a very pleasant, but exhausted night maternity nurse, the monitor I was still hooked up to went bananas. Out of nowhere, I was in labor.  That same moment, my water broke.  I actually scared myself.   Could this have been a mother’s intuition?  It didn’t matter.  In less than two hours, Thomas Paul was born.

That same gut feeling I had before I left for the hospital kicked in the first moment I got to hold Tommy a few hours later.  I knew something wasn’t right, but I felt like I would be a horrible monster of a mother if I told anyone.  My intuition was once again spot on.

It’s been a long eight years, but the best eight years of my life.

Tomorrow, when Tommy gets home from his appointment at the Lurie Center for Autism (who schedules a doctor’s appointment on their kid’s birthday?) with Eric, there will be an explosion of streamers all over the dining room, balloons, and mustaches to greet the birthday boy.  I’m sure Tommy will stim to his heart’s content and beam from ear to ear with glee that he’s getting to be a big kid.

And just as I was vague in my responses with Will regarding his brother’s entrance to this world, I will keep my wide array of emotions I feel each year Tommy hits another birthday to myself.  There is not a day I don’t thank God for bringing him into my life, nor do I take him for granted.  I’ll also give a nod to Uncle Paul for not making me look like a complete fool that night eight years ago.

Happy Crazy 8, Tommy Pickles.  xoxo

Daunt drank ta wad-her!

I drew the short straw.  I’ve had a string of luck over the last few weeks that has let me off the hook taking Tommy to OT on Monday nights.  I opt to take him to MIT for his running club (Step Ahead Running) where he is coached by college varsity athletes.   I haven’t had to bring him to any doctors appointments in the last few weeks, either; that is, until yesterday.  I drew the short straw.

Tommy’s been having difficulty with ocular movements (tracking with his eyes).  His OT has noticed it in her evaluations as well as the neurologist who conducted his neuropsych evaluation at the Lurie Center last spring.  Both professionals suggested we make an appointment with a developmental ophthalmologist.  I did.  The wait to get into Mass Eye and Ear/Boston Children’s Hospital is lengthy.  We waited.

I have learned over the years to wait to tell Tom when he has an appointment to go anywhere.  He perseverates.  Sometimes it’s good, sometimes it’s bad.  It depends on whether or not he wants to go.  I’m tired of telling him when Halloween is; although I can’t wait to finish this year’s costume.  Stay tuned.

I had to have Tommy dropped off to me at work so that I could take him for his 12:30 appointment in Boston.  The minute he got out of Grandma Jean’s car, he cried.  For a solid hour all I heard on loop was “But I don’t want to go to the eye doctor.”  His crocodile tears make me sad.  I knew why he really didn’t want to go; he absolutely adores Grandma Jean and didn’t want to leave her.  I didn’t blame him.  She makes everything better.

When we got to the hospital, Tommy was sidetracked by everything it seemed.  In the lobby of Children’s Hospital, which we usually do not go to (we go to Mass General Hospital), there is a giant ball contraption that I swear used to be at the Boston Museum of Science circa 1984.  I distinctly recall the noises the balls make when they hit certain metal pieces, almost like a bell.  He could not peel his eyes away from it.  Off he went, stimming and flapping.  I finally got him to walk with me to the ophthalmology department.  We checked-in, about an hour early, and low and behold…there it was…as if a giant beam of light shone down from the heavens…. In the waiting room was a Nintendo Wii.  Oh, no!  Are these folks asking for trouble?

When Tommy plays Wii, clear the room.  He stims to the point of profuse sweating.  I mean, it looks as though he stepped straight out of the shower.  His hair and clothes get soaked.  That’s how stinkin’ excited he gets.  He also makes the most unusual noises and they’re LOUD.  Fortunately, the console did not work.  I thought he was going to have a meltdown, but he didn’t.  Tommy actually took it in stride–that almost never happens.

The next family to arrive went through the same glee and utter disappointment we just did.  The mother of those two other children tried as best she could to get that game working, but to no avail.  I noticed immediately that she spoke with an Irish brogue.  After she lost her patience, she yelled “daunt mind it, it’s probably an auld wan.”  That was all Tommy need to hear, an accent of any sort.  I knew what was to come out of his mouth as he turned to me before his lips even moved.  “Mummy!”  Damn you, Peppa Pig.  Tom loves to speak in tongues.  I don’t think he does it with any purpose (i.e. to be funny), he just does it.  Before long he was chatting with this woman, asking about dinosaurs and repeating back to her almost everything she said to him.  I tried to act like I didn’t know him, but I was the only other adult in the waiting room.

When it was our turn (thankfully we were called in early), Tommy started telling the doctor he didn’t want to go to the eye doctor.  As soon as she responded, I got that hot flash I get when I want to hide.  She is from India.  She has an accent.  Tommy did, too, for the rest of the appointment.  I liked this doctor.  She was very pleasant but stern.  In my experience, trying to do an eye exam on an autistic child can sometimes be like trying to tack Jell-O to a wall.  Good luck.  We muddled through until it was time for the eye drops to dilate his eyes.  She told him it was water and nothing to get so upset over.  WRONG THING TO TELL HIM!

We were ushered back to the waiting room while Tommy’s eyes dilated.  The more his vision blurred, the more he cried.  He was pretty upset that he couldn’t see his hands, my phone, the books on the table, or even the broken Wii with any clarity.  When the doctor came out to get us, she knelt down to pick something off the floor.  Tom immediately ran to her and grabbed her around the neck.  Hot flash for me, again.  He was hugging her as tightly as I’ve ever seen him hug anyone and I’ve only seen him hug a few people.  He buried his little face into her shoulder and cried that she can’t give people water anymore “yaul brack deer eyes.”  Right back to the brogue.  At least he wasn’t mimicking her accent any longer.  She melted.  I’ve never seen Tommy crack someone like he did this woman yesterday.  I wanted to laugh and cry at the same time.  Admittedly, I was jealous of the hug he gave this stranger.  He doesn’t hug often; when he does, it’s usually because he’s prompted to do so.

When we were through, Tommy and I headed to the check-out receptionist to get our temporary sunglasses.  The woman gave him a disposable pair to wear out in the sunlight “just like astronauts do!”  WRONG THING TO TELL HIM!  He knows better.  There was no helmet these were attached to, no hinge, no logo…he wouldn’t wear them and he had a lengthy list why.  Luckily, I had James’ stunners in my purse and we squeezed them over Tom’s face.  From the ophthalmology office to the parking garage, Tommy told every person we passed not to drink water or shower, “wad-her makes yar eyes blur.”  So we’re clear, told means yelled.

On our ride home, the weee lad was content to watch more Monsters, Inc. and tell me he didn’t want to go to the eye doctor. mz1fc96qlage4aomdhe7w.jpgWhatever you do, don’t drink the water.

 

 

Keep the Change…

I hate change. It makes me uneasy. This last week has been one where I feel as though I’ve been pulled in twenty different directions, but that’s just life coming at you.

Amidst all of the hustle of work, grad school, second jobs, kids, Tommy, I had to carve out time to take one last walk through the family homestead that is passing to new owners on Monday. It’s a house, a thing, I know that. But it was also a home. It was the material matriarch of the Butler family and the last tangible grasp of generations past. When I walked through the empty downstairs, I heard Ruth everywhere.

Before I left my grandmother’s house, I stood at the fence to chat with her neighbor of 37 years. I was so happy to see both him and his wife. Sandwiched in the conversation, he quietly told me I hadn’t changed a bit. “It’s every day for you, isn’t it? I know,” he said. That’s all he had to say. He has no idea how grateful I was to hear those words. He sees me. I feel dismissed most days. I haven’t seen him in years and he sees me. Thank you for that. After we finished our conversation about nothing over the fence, like old neighbors do, I had to leave. It was too much.

Leaving 195 for the last time I thought about all of the times I left that winding driveway in Ruth’s big ’76 Buick on my way home to my parents. Her neighbor was so wrong. I’ve changed a ton. My biggest changes have come in the last seven, soon to be eight years (Tommy’s turning the big 0-8 in November!). I’m grateful for everything I took and gave to 195, but you can keep the change.

To Infinity and Beyond!

Like most history teachers (buffs), I would love to spend my summer traveling, visiting historic sites, and watching people in their natural habitats. My idea of a family day trip or road trip probably would not reflect the average family’s. Here are my top choices in no particular order: presidential libraries (any of them), WWII Museum (New Orleans), Route 66, Gettysburg, Graceland, Mt. Rushmore. I can go on for days. Finally, much to my excitement, I got Eric to agree to a few nights in Washington, D.C. this August with the boys. We ended up in Florida.

Before you start thinking we aren’t capable of following GPS to our nation’s capital, let me explain. For the past 4 years, at least, Tommy has been obsessed with the solar system. He’s got books upon books about planets, space, you name it. He has solar system t-shirts. He has solar system blankets and pajamas friends have made for him. We take him to the observatory at BSU. And when he got to pick out a pattern for his leg braces, yup, he chose the solar system pattern. Most nights we go outside to find Jupiter in the sky. If we can’t, we use our SkyGuide App to find it. I’ve laminated countless planet print outs for Tommy to “earn” at parties, appointments, car rides, plane rides (didn’t work that time in Orlando Int’l) and the like to keep him calm.

Autistic kids usually seek predictability. The solar system is predictable and constant (for the most part). Adults are predictable (for the most part). Letters and numbers are predictable. It just makes sense. Tommy’s much too literal and not able to think in the abstract. Jupiter is always a great gas giant with the Great Red Spot. Boom. Constant.

This summer was not without our stressors, but that isn’t unusual when you have children (and a special needs child). It didn’t take much for Eric and me to change our plans and head further south to Titusville, FL. Our decision did not disappoint; Tommy thought KSC was out of this world (pun intended)!!! He soaked up all 3 hours of the IMAX movie about the Apollo Missions, Shuttle program, and the future missions to Mars. Okay, it was probably closer to 30 minutes, but to me it felt like 3 hours.

KSC didn’t do much for me, but I could’ve watched Tommy all day. Pure happiness. That made the summer for both Eric and me.

If you’re on the subject of space and you’re in Florida, you can’t ignore my favorite space ranger, Buzz Lightyear. After hitting the Florida coast, we stopped into our Disney Vacation Club for a few days. Like I’ve said before, Disney just gets it right. It’s clean, it’s well-organized, and they level the playing field for everyone, especially those with disabilities.

Will got his thrill ride and firework fix and James has his first crush- Minnie Mouse. We had to see Minnie each day. All three had to meet Mike and Sulley. I do love Mike and Sulley.

I didn’t get the educational trip I was looking for, but I learned quite a bit just the same. Tommy volunteered for a one way trip to colonize Mars. That hurt my heart. Noise canceling headphones for Tommy are a game changer. We only had one meltdown all week. I’m not sure I can explain why I’ve fought using them outside of school for so long. This is probably the last trip I can use the double stroller for Tommy and James. They’re only within a dozen or so pounds of each other (at 7 and 3), but Tommy needs a bigger stroller. He just can’t tolerate all the walking. When kids with autism who are a bit older and stim much of the time, people stare a whole lot more. I get more mouthed “so hard” from other mothers than I ever used to. Tommy screams and cries after rides, but then a day later he says he loved it and wants to go again. He wants to love them, but they’re sensory overload.

Lastly, this trip reiterated how much I love being with just the five of us. I appreciate the help we get, but we needed this time to just be with each other, regardless of where we went. My Momma Tribe gets it.

So here we are on our last few hours of this road trip. Coming home with us are green Army men, Buzz Lightyear, and Rex from Toy Story. If James pushes the button on Buzz one more time, he (Buzz, not James) may ride the bumper the last 100 miles.

Fun fact: the bathrooms in the Vacation Club Villas at the Grand Floridian have TVs in the mirrors! We visited “framily” staying there for a night before they were heading out on the Disney Cruise. I was excited to check out the digs. What did my three kids do the whole time they were there? You guessed it. They stood in the bathroom for over an hour and watched Mickey Mouse cartoons. Oh, and James is 100% potty trained now. Thanks Disney!

FAA Regulations

It’s that time of year, we’re off to Disney for the Fourth of July.  I have made this trip with Tommy seven consecutive summers.  You’d think I would have this down to a science by now.  Every year, I trick myself into thinking I do.  Ha. I don’t.  However, I only forgot one of Tommy’s medications this morning and had to turn around from our way to the airport at 5am to get it.  Not bad, huh?  I didn’t think so.  I made it to Green Airport in 25 minutes.  I didn’t even speed; I don’t think.

We made it through bag check and security with relative ease.  This time, I was so careful to make sure all medications that are liquid were separated, feeding pump was separated, and the canned elemental formula was still sealed.  What a nightmare we had last year trying to get through security with an open can of powered formula.  I get it.  You can’t have a white powdery substance all over your bags and not expect to have it tested and retested.  Sometimes it gets tested a third time.  It’s explosive, but only for Tommy (if you catch my drift).

Tommy cried through security, but overall held it together until I could medicate him.  Once we checked-in at the gate and got Tommy situated to board first, with feeding pump running, leg braces strapped, and his temperament in check.  It’s stressful for me and it makes me cranky until we’re on the airplane.  My apologies, everyone. When I finally boarded, I thought to myself, “dust yourself off, Leigh, this was the smoothest yet.”  I should know better.

We boarded Tommy first, no sweat.  He’s currently sitting in 1B and flanked by Grandma Jean and my mom.  The flight attendant had a field day with Tommy Pickles and even incorporated him in his pre-flight antics/announcements.  Southwest.  Gotta love them.  The flight attendant, James, asked Tommy who he was traveling with.  Tommy offered up that Dad isn’t with us, he’s working.  James said Dad was a smart man.  I laughed.  He’s probably right.  But then again, what could possibly go wrong?  We’ve made it over the biggest hurdle.

So far, Tommy has whined a bit and gotten a tad distressed over nothing, really.  But overall, he’s in a good mood and anxiously waiting to see a Disney resort bus.  Me?  I have three kids in tow with a group of framily.  Eric is still working and couldn’t make this trip.  It broke my heart to hear Tommy tell him at 4am that he would miss him. Tommy doesn’t spontaneously tell us how he feels…ever.  But I admittedly was pretty proud of the seamless morning so far.  I am a worrier by nature.  Did James poop?  How will I change him mid-flight if I have to without offending EVERYONE in a 10 row radius?  Is Tommy too loud?  Is Will getting enough attention?  Smooth sailing.

Smooth sailing….ha.  I got up to add more formula to Tommy’s pump, but I had to mix some in his tumbler first.  No sweat.  Into the overhead bin I went.  No bags fell on anyone’s head.  No sweat.  I got the sealed can of Elecare.  I got bottled water.  I got the tumbler.  I was a mixology master at this point, until I noticed the metallic seal (you know the one) over the can of formula was bubbled.  Oh, cabin pressure.  Open it slowly, Leigh.  POOF!  Slowly?!?!?!  It didn’t matter.

The 10 row radius I was worried about heard Tommy yell, “Whoa!  There’s a dust storm on this airplane!!!”  I looked like I antiqued myself.  Formula went everywhere.  Every blessed where.  I have it my hair, my eyelashes, down my shirt, in my mouth, my sandals… If you’ve every smelled Elecare, you can appreciate how badly it smells.  The floor of the cabin looks like it snowed except for the bare spots where my footprints are.  Anyone have a Dyson?  A shower?  Tommy casually went right back to playing his game as if this was normal.  I laughed, which was awful because I laughed so hard I was crying.  My tears mixed with dried Elecare is disgusting.  If I get hungry, I can just lick my own face.  If James comes back to the front of this aircraft, he’s going to roast my life over the intercom.

The pilot just came out to use the lavatory.  The first thing out of his mouth was “what the hell happened out here?”  I dusted myself off and returned to my seat.  No sweat.  I hope I don’t sweat, I’ll have more caked-on formula.  Seriously, smooth sailing.

I’ve gotta go, here comes James.  Not my James.

 

 

“I’m grateful for the eye of the hurricane, Mom.”

I don’t have any inkling what Tommy meant when he told me a few weeks back, because I happened to be the only one in the living room at the time, that he was “…grateful for the eye of the hurricane…”  Of course, he had his iPad in hand and I presume he was watching a YouTube video about hurricanes.

I’ve mulled those words over in my head for weeks now.  He’s too concrete to think in the abstract; far too literal.  I, on the other hand, am just the opposite.  For me, living with a child with autism is very much like a hurricane.  It comes out of the clear blue sky and brings winds that feel like they will rip your home apart.  That which is firmly planted with deep roots will surely withstand the high winds, but not without losing some branches.  Others will grow in time.  After some time and after the howling of the wind becomes accustomed, the eye wall approaches.  In the eye of that storm is great beauty and if you’ve never experienced a hurricane before, it’s a return to normalcy.  It’s a normalcy until the winds change and the hurricane wall hits again before the storm moves on.  In that eye, you catch your breath and prepare for what is undoubtedly to come next.  This time, the winds are from a different direction and the damage is not the same, but just as mighty.  Yet, all that is firmly planted with deep roots will surely withstand the high winds.  I agree with you, my son.  I, too, am grateful for the eye of the hurricane.

We have may “eyes” in our lives that give us a chance to catch our breath.  Many of them are friends who are now considered our family.  But of all of the beauty who has gracefully helped us over the last seven years, and there has been so many (friends, colleagues, nurses, doctors, total strangers), the largest part of that sum are the professionals who work with Thomas every day at school.

It starts when Tommy gets picked up by his van driver who hasn’t the slightest idea that many a morning he is an anchor in a sea of instability.  He’s calming, rational, funny, and has been with us every school day since April, 2015.  He is patient and dependable and I wish he knew how grateful we are.  I’ve never once worried about sending my son to school on a 40 minute ride several towns away and 40 minutes back by himself.

At school, Thomas has, in my opinion, the finest and mostly highly qualified teachers ever to teach.  I will respectfully disagree, as a teacher myself for well over 20 years, that this is what teachers sign up for.  It absolutely is not, it is so much more. No two children are alike.  When you add the complexity of autism spectrum disorder to any classroom, it takes nothing short of the utmost compassion, brilliance, patience, dedication and a subscription to the notion that education is not just 180 school days.  This is a child’s life and will carry them over the span of their lifetime.  To date, these words, which I do not use lightly, fittingly describe Thomas’ teachers.  The same holds for the paraprofessionals who interchangeably work in his classroom.

Thomas’ school does not only focus on academics and access to the curriculum.  They do not cheat by providing a minimal free and fair education.  They provide the best education, and that includes his mind and body.  Thomas’ nurse is my lifeline into his day when I can’t be there to oversee his health, medications, feedings and the like.  His speech therapist is one of the best.  I challenge you to find better; you’d be hard pressed.  Lastly, the small team of counselors and psychologist that strive to help Thomas live in a world he was not designed to live in, guide us through to the world Thomas was destined for.

No words will ever be able to express my deepest and sincerest gratitude.

That afternoon Tommy talked about the eye of the hurricane, he could easily have said it to the wall, furniture, or James.  But he didn’t.  He said them to me.  I know when I stare into those deep brown eyes that tend to seem thousands of miles away, he is thankful, too.

I will end this month of awareness on a word of thanks and praise to these professionals, the eye of our hurricane.

Thank you for reading along.

~Leigh xofullsizeoutput_4004

Photo: Disney’s Old Key West, August 2018.

“Don’t make me come back to this house again!”

“Don’t make me come back to this house again!”  That was a direct quote from Tommy on Halloween, 2018.  My whole life I hated Halloween.  As a kid in the 70s/80s, our costumes were lame, anyway.  I was always jealous of my friend two doors down who had the best costumes every year.  As it turns out, Tommy isn’t a fan of Halloween either, but probably for different reasons.  I hate it for him because he has a feeding tube and can’t eat candy.  Fortunately, my mother’s neighbors are some of the best folks I know.  They always have something special for Tommy that isn’t food when he goes trick-or-treating.

The very first costume we could get Tommy to wear was a Snoopy costume when he was three years old.  All the kids in his pre-k class were wearing their costumes at school for a little parade on October 31st.  They clearly started practicing in August because I can still hear Tommy singing some spooky Halloween song.  Did I mention I genuinely despise all things Halloween?  This includes songs.  In any event, Tommy’s ABA at the time worked for weeks to get Tommy to put that costume on.  She finally had success on October 30 for almost two whole minutes.  Tom cried the entire time.

The following year, Tommy was already deep into his solar system obsession.  Go ahead and quiz any one of us, I can tell you things about the solar system NASA hasn’t even discovered yet.  Our dear friend Patti whipped him up a solar system costume.  He loved it and loved going house to house spewing solar system facts.

Tommy’s obsessions began to include landmarks, the Eiffel Tower especially.  When he was 5 years old, guess what he was for Halloween.  Yup, T-Bomb was the Eiffel Tower.  Cat made his 3-D costume and it even lit up!  It was awesome!  We laughed the whole night at Tommy illuminating the road as he went house to house.  Bonjour!

This past year, we cheaped out.  In actuality, Tommy wanted to be Chief Dunby from Lego City Undercover.  We didn’t make a single thing.  Two clicks on Amazon and his costume was at the door in two days.  But this past year was also much different from previous years.  Tom’s been working at school with his speech therapist to ask “wh” questions (who, what, when, where, why).  Do you know what it’s like to take an autistic child trick or treating who suddenly scripts “wh” questions?  I’ll tell you.

Halloween fell on a weekday that Tommy usually has ABA at home after school.  His therapist met us at my mother’s house so we could trick-or-treat in the greatest neighborhood of all time.  The plan was that she would accompany Tommy for the first 10 houses so she could help him with his social interactions.  After that, she had to go.  Bless her heart.  Some of the questions Tommy asked instead of “trick-or-treat!” were “who lives here?”  “What did you do today?”  “How old are you?”  You couldn’t get upset with him, he was doing exactly as he was instructed to do.  You could tell he was going through his rolodex of scripted questions at each door.  I was just glad I could hang back at the street while his poor ABA stood before some unsuspecting stranger as Tommy made them awkwardly uncomfortable.  It’s a good thing he’s cute.

After our tenth house, his therapist went home and we continued to walk Duffy Drive.  By this time, we met up with the other kids from the ‘hood circa 1980s.  We’re all 30 years older, but probably just as immature as we were decades ago.  Occasionally, someone would feed Tommy a line before he went up to a house.  We were also mindful of neighbors we knew from when we were kids and they know us.  Before long, Tommy was blowing his police whistle that came with his costume and telling folks he was confiscating their adult beverages!  Oh, no!!!  What had we done?!?  Whatever.  They probably shouldn’t be drinking anyway.

We continued to stroll.  I brought Tom up to a house where I didn’t know the neighbors, but they were awfully nice.  The woman who answered the door to this house, a house jammed with her adult children and their apparent families, thought Tommy was hysterical.  She invited him in.  NO!!!!!  I broke out in a sweat.  Tommy can’t go off script.  From outside I could hear Tommy blow his whistle in their kitchen.  I zipped my North Face up over my face.  Then he yelled “…and don’t make me come back to this house again, tonight!”  The laughter from that house was thunderous.  I died on their front steps.

When I got back to the group I inquired about the obviously fed line delivered inside that house.  Everyone laughed.  I pretended to be annoyed.  As Tom was coming out of the house, I tried to prompt him to say thank you.  Did he do that?  Nope.  He found another question from his repertoire.  “Can I sleep over?”  “Sure you can!  We’re expecting company on Saturday, come back, please!!!”  Lord help me.

Needless to say, we didn’t go back.  Tommy’s into natural disasters as of a few months ago.  A tornado costume is in the works; these things take time, after all.  I don’t want to jinx it, but it may be his best costume yet.  We’re trying to figure out how we can get it to spin.  I’m just thankful he doesn’t want to be a hurricane or an earthquake, but if he does, we’ll work with it.  If you don’t have plans for Halloween 2019, you know what neighborhood to crash.  You won’t regret it.

 

 

 

 

 

 

“Lady, do me a favor and look up every once in a while…”

Just about this time last year, I was driving to work at my usual 6:15 am time.  I’m like clockwork, it’s one of the few things I have control over in my life.  It had to be about this time of the spring because at 6:15 it was almost light out.  Regardless, I went through the intersection at the “Girls Club” on Dean Street and…. whoop! whoop!  Seriously?!?!?  I got pulled over by a State Trooper in an unmarked pick-up truck.  Ughh.  I rolled down all the windows and put my hands on the wheel.  When he approached the window, I gave him the “I know, I know.”  He asked me what I was doing.  I told him.  I was reading emails.  Did you see the red light?  Nope.  If I had, I would’ve stopped.  Are you always this honest and forthcoming.  Depends on who you ask.  Where are you going?

I genuinely could not have been less interested or bothered by this morning interaction with the law.  All of a sudden, the officer gave a “Holy sh*t!  You teach at a high school and you have a child with autism?!?”  That caught my attention.  How’d he know? Oh, that’s right, there’s a sticker on the driver’s side rear window (not the part that rolls down) of my Suburban (the ‘burb) designating such.  If I were to ever get into an accident or have some sort of emergency, folks need to know what they’re walking into.  I’ve taken quite a bit of grief over that sticker, but it doesn’t trouble me much.  It’s for Tommy’s safety and out of respect for first responders.

That same sticker sparked a conversation with Will recently as he and I were going to the  orthodontist.  I asked Will what autism is.  His answer didn’t surprise me other than he had Tommy’s medical needs mashed up with ASD.  He thinks if you have autism you have a feeding tube, you can’t eat normal food, and you can get very sick.  Huh.  I should probably clarify some of this at some point for him, but not while an orthodontist is mangling hardware in his mouth.  I’ll get there eventually.  We don’t actually talk about autism much with Will or Tommy’s medical issues for that matter, but the kid is no dummy.  He also doesn’t miss a trick.  On the way home from Will’s appointment, I asked follow-up questions and I have asked a few more since.  Here’s a snapshot:

Me: What’s autism, again?

Will: Mom, it’s where kids are special and some of them can’t do certain things and they can’t always talk, and they do different things….like different things.

Me: Does Tommy do different things?

Will: Yeah, obviously.  He jumps up and down…ALOT.  He makes funny sounds and noises.  He cries all the time.  He doesn’t know what’s safe and not safe. He plays with baby toys. He’s awfully impatient.

Me: So what’s good about having a brother with autism.

Will: Mom, he’s hilarious.

Me: How so?

Will: You know how he repeats himself all the time?  Well, sometimes he’s repeating jokes and they make me laugh.  And he’s really smart.  I learn so much stuff from Tommy that kids at school don’t know.

Me: Like what?

Will:  Tommy teaches me about science, space, the planets, natural disasters, and, well…there’s one thing I probably shouldn’t say.

Me: (In a panic) Will, what?!?

Will: Tommy knows passwords to everything…WiiU, Xbox, your phone, the garage, the house, Verizon, Netflix, Amazon Prime, the ATM…

Me: I got it Will.

Will: Mom, do you know what else? I love Tommy’s friends: Mason, Slyar and Connor.

Me: You do?!? Why?

Will: Because they’re really smart and funny and they love Tommy even though he doesn’t play with them when he sees them.

Me: Does Tommy love you?

Will: Duh.  I know because he’s always excited when he sees me even though we fight.  Tommy needs my help and lets me help him.  I tuck him in at night when he cries sometimes.

Me: Does Tom tell you he loves you?

Will: Only when you tell him to.  But I know he does.

Me: What would you want the world to know about autism, Will?

Will:  I wouldn’t tell anybody anything.  We don’t need to broadcast it to the world!!!!

Me: Why not?

Will: I don’t want people to make fun of Tom.

Me: Who would make fun of him???

Will: Kids might, but probably grown ups.  Some of them make fun of everyone.

Me: Well, forget that, then.  What do you want Tommy to know or kids like him to know?

Will: I learned at Bennett School and from a video I saw that it doesn’t matter if you’re born with autism or no autism.  You’re perfect just the way you are.  Maybe it was YouTube.  Am I going to get busted on that one, for watching too much YouTube?

Me: Will, are you worried about that?  Getting busted?

Will: No, but I worry about bees and going to college with Tommy.  He’ll want to go for space and I want to be an engineer or an author.  What if we can’t live together? Oh, and Tommy’s my best friend.  I have a best friend at school, but that’s different.  Well, he’s not different.  You know what I mean, right, Mom?  Mom, what happens if Tommy gets sick when we’re in college?  Will you come get him?

Yup, William is eight years old going on 90.  He’s pretty astute.  I hope that stays with him.  But back to the sticker on my car.  Does Will think we’re just broadcasting Tommy’s ASD?  That morning I got pulled over I was sure I was in for a hefty ticket and I could not have cared less.  I was speeding.  I was checking emails (that’s pretty much the same as texting).  And I blew through a red light.  That guy got me, good for him.

The officer leaned on my car window chatting about being a teacher and then asked me why I offered up the emailing bit, even though he clearly saw I was on my phone.  I told him I didn’t have time to lie.  He asked what time school started.  It was now 6:20, school started at 7:30.  He was perplexed.  I explained that the last thing I needed was some high school kid to drive by and then I’m someone’s Snap story.

He asked if having a son with autism was hard.  I told him his job was far more difficult.  He asked if teaching was hard.  I told him his job was far more difficult.   He laughed.  I laughed (give me a ticket already!!!!!!).  He did the bang on the window frame and said, “lady, do me a favor and look up every once in a while.”  You got it, sir.

I wonder if that sticker has gotten me out of anything else. I doubt it.  And for the record, it’s not a broadcast, Will.

I’ll be changing my passwords in case you’re worried.

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Bird is the Word

GvKocIXdRwylD1yU12OEEQIn a little more than an hour, Tommy will be arriving home from his weekly Saturday stint at a center-based ABA program for children with autism.  He goes there each Saturday in addition to three 2-hour ABA sessions at home during the week.  He also continues to go to occupational therapy once a week in Weymouth.  The man has a busy schedule.

As I write this, Will is at a classmate’s birthday party and J-Bird is napping.  Yup, the “Bird” still naps…sort of.  Eric took Will and Tommy to Fall River this morning to watch the two cooling towers in Somerset implode at precisely 8am.  They were out of the house just before 7.  We spent some time yesterday looking at road closures and viewpoints so that Eric could make a fairly quick exodus in order to get Tommy to Middleboro for 9am.  Tommy stays at his program from 9 until 3pm.  It must feel like another day of school.  It makes a long week for a kid.

I also had to spend some time showing Tommy YouTube videos similar to what he’d see because he is deathly afraid of implosions and explosions, but mostly pertaining to the sun.  It’s not unusual for Tommy to scream in the middle of the night that he doesn’t want the sun to explode because we will all die.  He feels the same way about tsunamis and tornadoes.  I can’t fathom what Tommy envisioned when Eric asked him if he wanted to go see two towers implode.  I look forward to trying to pull that report out of him when he gets home.

This morning’s schedule left me home with James all day.  I’ve spent quite a bit of time with Mr. James (or Hames as he refers to himself) this week as I recover from my surgery.  The kid just makes me laugh and I can’t imagine our family without this character.

That wasn’t always the case for me.  There was never a question after having Tommy that we wanted more children.  When we found out we were pregnant, we were ecstatic.  I quickly had the wind knocked out of my sails.  I use the pronoun I rather than we because I’m not sure people speak to men like they do to women about having and raising families.  Perhaps I fielded the questions because Eric is the boss of sorts (not at home).  Here are some of the comments I got:

“What if lightning strikes twice?”

“If I were you, and I found I was pregnant, I’d kill myself!”

“I can understand why Eric would want to try to have another son, but why you?”

Each of these comments implied that Tommy is somehow not good enough or less than perfect.  I’m not really sure I can articulate how they made me feel.  I don’t think any of them came from malice.  I can say that for every comment like one of these, I think a bit less of the person who’s mouth from which they were uttered.  In my opinion, it was a commentary on them rather than Tommy or any other person with special needs, for that matter.

I’d be lying if I said that these remarks did not get in my head, they did.  But here we are almost three years later killing it!  James is the greatest thing that’s happened to this family since Tommy!!  Tommy was the greatest since Will.  You get my point.

Tommy is even starting to warm up to James; starting being the operative word.  Just the other day Tommy reluctantly gave James a kiss on the head and a half hug before James went off to bed!  That’s progress!  James on the other hand LOVES Tom.  “Where’s Tommy?”  “Tommy at school?”  If you ask James who the boss is, who his best friend is, who he loves, he answers “Tommy” every time without hesitation.  We laugh because if Tommy were asked the same questions, you best believe not one answer would be “James.”  We still get the occasional “I told you not to have that baby!”  That’s a script, but we haven’t figured out from where Tommy got it.  Ha.

No human is perfect.  No family is perfect.  Everyone’s problems are relative to their own lives.  Autism is not lesser, just different.  There’s a difference.

I can hear James singing one of the songs from The Grinch, signally the end of his afternoon nap.  He’s also laughing hysterically.  That’s no surprise coming from the kid who climbed the center of the Christmas tree at a year old, mean-mugs strangers for a laugh, licks your face when you ask for a kiss, and doesn’t have time for the mundane when he’s doing the “hot dog dance.”  He’s genuinely a happy-go-lucky guy.   I suppose I’ll go get him up before the rest of the crew gets home.

In the meantime, let us all choose our words carefully, myself included.

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Autism Speaks: 12 Things Parents Want You to Know

I read an article this morning from Autism Speaks through following the Flutie Foundation (The Doug Flutie, Jr. Foundation for Autism) page.  These articles, like everything else, are a dime a dozen.  I quickly scrolled and chuckled to myself as I scanned each point and its explanation. Here’s my thoughts on a few of them:

#1.  Autism is a huge spectrum.  You’ve probably heard the saying “if you know one person with autism, you know one person with autism.” I know tons of children with autism through my work as a teacher and through Tommy.  Not one of these individuals is the same.  They’re similar in ways, but definitely not the same.  Therefore, as parents, our roads aren’t the same.  Don’t compare us.

#2.  A routine and transition warnings are helpful for a child with autism.  School is inherently far more structured for Tommy than home.  We try to use visuals as much as possible (pull back the shower curtain for “Checklist for Showering”, check the “Calming Down Checklist” on the front door, or find the “Tattling v. Telling” visual in the playroom).  When we foresee a disruption to the routine, out come more visuals.  Problems at school with rigidity?  More visuals.  And for God’s sake, make sure you give at least a 5 and 2 minute warning for EVERYTHING.  Honestly, these have been great for James, too.  Will could write them.

#3.  A child with autism needs extra time to process language.  Tommy CANNOT, I repeat, CANNOT complete a task that has more than two steps.  Here’s an example: “Tom, go upstairs to your room and get your pajama bottoms and a pair of long socks.” Two steps, right?  Tricked ya.  That’s three.  You’re most likely to find Tommy 20 minutes later in his bedroom stimming with an Eiffel Tower a centimeter from his eyes.  His foot stool is more than likely at his bureau to get pajamas, but socks?  Forget it.  And whatever you do, DO NOT PARAPHRASE or REPHRASE what you told him.  The process starts all over again!

#4. Receptive language and expressive language are two different things.  Ha!  Scripts sometimes are my worst enemy.  This past winter I rear-ended someone.  I let my foot off the brake and rolled to be more precise.  However, I wasn’t in my car, I was in Eric’s.  Holy s*@t.  Eric loves cars more than anything.  There was no damage to either car, but the boys (actually just Will and Tom) were upset.  That evening was not my finest mom moment.  Tommy was crying and kept saying he didn’t want to be in an accident.  Will kept saying I ruined his perfect day.  I was upset because I didn’t want to hear it from Eric.  By the time Eric got home, all three boys were in bed.  I told him what happened because two out of the three boys were unknowns.  Who would rat me out first?

The next morning, it was Tom who opened his big mouth. He scripted me snapping at him while I was trying to exchange insurance info, etc.  Ugh.  The whole thing!  I panicked, only because I was worried he’d do it at school, too (I may have swore; according to the script, anyway).  But, hey, we’ve all been there right?  To this day, Will has never mentioned it.  He’s a vault.

#5. Children with autism are literal.  “Tommy! Spit it out.”  He spits.  “Tommy, give me a second.”  “One, time’s up.”

#6.  A child with autism can get stuck on one subject.  I’m dying over here.  Planets, landmarks, natural disasters, Grandma Jean, black holes, letters, numbers, Disney buses.  This makes me literally laugh out loud.

#8.  Sensory issues are a distraction for many children with autism…smells may cause them to gag.  We can’t have coffee at our house with Tommy home.  This makes me sad, and tired.

#9.  Children with autism use stereotypic behaviors or receptive behaviors when they are excited, bored, or stressed.  “Oh the rocking and flapping is annoying?   Sorry, so are you.”  You can’t believe how many people make comments about Tommy’s stimming and flapping in public.  Don’t tell him to stop, he can’t.

Folks can learn from the few neighborhood kids we have over here.  They never say a peep about Tommy riding a tricycle or flapping.  They even try to get him to play wiffleball.  Those kids have adapted, too.  They know not to tell Tommy to run home after a hit. That always gets the “I AM home.” (see #5)

#10.  Positive Reinforcement will be helpful but punishments will not.  Someone, not saying any names, threatens to take preferred activities away from Tommy.  Do you know what Tommy does?  He throws them away himself.  I’ve retrieved an iPad or two from the trash.  He’ll learn.  In the meantime, Tommy will keep throwing stuff away.

I got a chuckle out of this article.  Not because I think it’s ridiculous, but because I can relate.

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Knock, knock. Who’s There? Just let me in!!!

I’ve said it before, much of what Tommy talks about is a rolling script he’s been playing on loop in his head. To that, much of it is appropriately used in what you could be fooled into thinking is a conversation. Spend some time with him and you’ll pick up on from where he’s getting his scripts.

I can vividly remember a few years back taking a course that, for a a teacher, would be considered professional development. For parents, it was part of the code to unlocking your child’s world. “More Than Words.” The course was offered to parents of children in the collaborative where Tommy goes to school. It was there I met some amazing Moms, one of which is part of the ever exclusive ‘Mom Tribe’ I belong to. I digress.

Tommy had only been in the Collaborative, at age 3, for 2 weeks or so when I started that course. I felt so exposed answering questions in front of other parents I didn’t know. The woman teaching the course asked us all to share what we wanted most from this particular class or from our children; whatever we were comfortable with sharing.

When it was my turn, I choked. I finally responded and I felt embarrassed, but I desperately wanted Tommy to have a spontaneous conversation with me. I mean, a real, meaningful conversation. I’m still waiting.

However, through that course and our experience, I have learned to read Tom. He can complain (mostly about James) and fight with Will. He can cry when he’s hurt, mad or upset. He laughs when he thinks something is funny or he wants you to think it’s funny. He loves knock, knock jokes. He talks to himself. He’ll tell you what he’s done over the weekend even though it never happened (we’ve just figured out it’s what he wants to do, but he tells it as if it has happened). Ughh, just let me in, Thomas! Just for a second!!!

About a month ago, I was putting Tommy into bed. He’s seven and small for his age. I still carry his limp body from his heavy night meds up the stairs to tuck him in under 15lbs of weighted blankets. He rolled over and looked up at me that night with a look I had never seen before and haven’t since. It’s indescribable. He said “it’s lonely at night, Mom.” My heart broke. I knew what he meant, but I asked him anyway. He said he doesn’t like being awake all night while everyone sleeps. His meds (which would put you or me to sleep for days) wear off in a few short hours and he’s up much of the night. As quickly as Tommy let me in, I was shut out again. I went to my room and cried. In seven years, that was the realest Tommy has ever been and I can’t even put it into words. But trust, it was more than words.

Since that night, we’ve gone back to trying to read Tommy. “Whatcha thinking about, Tom?” That gets one of two answers every time. 1) Grandma Jean or 2) everything.

He’s in there, though. I saw it that night. I felt it, too.

When I got home from the hospital last week after being gone for two days, Tommy eventually came over and laid down on the couch next to me. He was very careful not to touch. I think it was his way of saying he missed me. That’s what I’m telling myself, anyway.

My favorite scripted joke from Muppet Babies:

Waldorf: “What smells bad?”

Statler: “Maybe it’s one of the bear’s jokes. They’re all bad!”

Both: Dohhhhh!

Let’s not get all political…

Healthcare is political. End of story. I don’t argue about, discuss it, or care to have my mind changed. I’m even less inclined to know your political tendencies. When you have a child with a chronic illness (or in Tommy’s case, illnesses) and autism to boot…it’s political. It doesn’t matter much which side of the aisle you sit on.

There are so many choices I didn’t get to make. I didn’t decide for Tommy to be sick. Among many diagnoses, he has hypogammaglobulinemia. Say that three times fast. It’s a suppression of the immune system. A seemingly innocuous infection one of us may have, may be life-threatening to Tommy. He takes antibiotics daily to try to prevent this. Normally, not that there’s anything normal about it, he could get IVIG transfusions; but both infusions Tommy got at 9 months old gave him meningitis; so scratch that. Cough around any one of us and watch us react like you have the bubonic plague. We simply can’t get sick in our house. James had strep throat this winter. We ALL did heavy rounds of antibiotics just to keep Tommy from getting it.

I also didn’t choose for Tommy to have a platelet disorder, or FPIES, or GI issues, or a sleeping disorder, or ASD. The list is longer, but you get the point. Not once have I resented any of what has come to us and what potentially awaits us. It is what it is.

What I do resent is someone making the decisions regarding who can be treated, by whom, and for how much. You can’t imagine the financial expense: ABA therapy, OT, medicine, feeding pumps, syringes, feeding bags, amino acid formula, leg braces, co-pays, hospitalizations, genetic testing, lost wages, sick time, high health insurance deductibles (don’t get me started on that one), supplemental insurance just for Tommy to cover what’s not covered by our primary insurance… it’s overwhelming. Yet, I’m thankful every single day that I am able to work to cover all of this. Not every mother (or father) has that option.

I’m also grateful that we live within 40 miles of the medical Mecca of the world. Not every family has that option, either.

When I was a kid, our elderly neighbor, Mr. Vaz, used to say to us “be thankful you have the money to pay the taxes.” At 7 years old I never knew what the hell he was talking about. If I could tell him anything today, I’d tell him that his advice from 1983 has carried me this far. I often wonder if he was being literal or figurative. Perhaps it was both. I just wish in 2019 parents didn’t have to worry about decisions that weren’t theirs to make by what seems like intangible decision makers. Kids don’t have the “money” to pay the “taxes,” folks, nor should they have to. Just let them be kids.

In the words of George H.W. Bush “read my lips, NO NEW TAXES!” I can’t afford it; literally and figuratively.

Will’s Got Me Beat

Back in the fall, Will signed up to be in an Invention Convention for elementary school kids city-wide. Like almost every textbook project you have ever known about, Will wanted to participate but couldn’t come up with an invention. By Christmas break, the real moaning and groaning began.

It didn’t last long; I have no patience for it and I didn’t think this task was beyond Will. “Think of a major problem, and then think of a solution.” He kept bringing up pollution and coming back to it. He’s worried about clean drinking water in Cambodia (that’s 100% true). I liked where he was going, but those problems seemed beyond the scope of Taunton’s finest elementary competition. Let’s not forget to mention that he procrastinated a bit. His January deadline was nearing.

After some careful thought, Will identified a huge problem; one he could reasonably tackle. To be more precise, after me trying to cut Tommy’s fingernails, Will identified a huge problem in our home. Cutting Tommy’s nails (and hair) is like trying to tack jello to a wall. It’s next to impossible. I dread it and I wish there were something I could do to keep his hair and nails from growing. That would be the miracle invention for kids with sensory issues!

Will wanted to make a device that made cutting Tommy’s nails easier. I immediately thought of the Jetsons. That’d be cool…snap your fingers and a robot does all the work (with Tommy, the robot would do all the fighting). The more Will theorized, I drifted over to the Flintstones. They probably had some sort of primeval animal file nails down while Betty and Wilma giggled. Genius.

As it turned out, Will had a pretty clever train of thought. Tommy uses a weighted blanket when he’s upset or going to bed. If he could make some sort of weighted glove that held Tommy’s hand, maybe he wouldn’t get so anxious while his nails are getting cut.

My mom, who Will absolutely adores, had the patience to work through the cutting, measuring, sewing, velcro-ing and incessant talking. A few painstaking prototypes later and …Boom! The “hamburger”, as he calls it, was created.

Will didn’t win anything for all his hard work and ingenuity at the Invention Convention. That’s okay, we haven’t had a single meltdown over trimming nails since January. That’s the real prize.

Notre Dame

It was devastating to watch the news this afternoon into the evening and watch flames seemingly erase hundreds of years of history. This came after watching segments of the Boston Marathon and keeping up with the updates from MGHfC and MEEI. What an emotional rollercoaster.

I like watching the marathon and especially reading the stories of the thousands of runners and why they are running. Everyone has a reason. Because of our affiliation with MGHfC, the Lurie Center for Autism, and MEEI, I read stories that would break your hearts. So many doctors, nurses, siblings, friends, and mostly parents ran for one child or another. It’s gut wrenching. Each one of them strapped their sneakers on and put one foot in front of the other. It’s nothing short of awesome. Paul Fussell, WWII veteran, literary historian and professor at Rutgers and then UPenn, said “a hero is someone who has been through hell and it doesn’t ruin them.” He was talking about fighting the Nazis, of course. But so many of these runners today fit the bill, for sure. So do the children and loved ones they were running for.

Just a few hours later, fire ravaged one of the most prominent landmarks on this planet. The first time I stepped foot in Notre Dame Cathedral, I was young and dumb, and it took my breath away. My eyes filled with tears. You could not help but to look toward the Heavens and feel there is a power much larger than all of us. Each time I traveled to Paris and to Notre Dame, it was as if it were my first time all over again. This Cathedral is a hero. She’s been through hell; revolutions, war and now a fiery hell. And guess what, it won’t ruin her.

There’s probably a bit of that in all of us.

Xo

It’s not just a bracelet.

This morning, I was given a gift, a thank you, for not doing much, really.  But the gift was from someone who is very important to Eric, me, and the boys. It was a Lokai bracelet for Autism.  I cherish it already.

As I was cutting the tag off of the bracelet, I naturally read it.  My heart sank a little.  Lokai supports the mission of Austism Speaks.  It then reads “the organization is dedicated to promote the solutions, across the spectrum and throughout the life span, for the  needs of individuals and their families…”.  Throughout the life span.

As Tommy ages (seriously, he’s only seven, but still), I am keenly aware that his behaviors that were once cute are now slowly teetering towards odd.  I know that he’s socially much younger than his age and his intelligence is much higher.  I don’t know what the future holds for Tom, but I believe in my heart that the best is yet to come for him.

Where will he live?  Will he be able to live on his own?  Will he have a job?  Will he go to college?  Will I be able to retire?  What if something happens to me or Eric? Will William take care of him (of course he will)? These questions keep me up at night.  Truth be told, it doesn’t matter.  Whatever the future holds for Tommy, I will be okay with it.  I’m planning and I’ll err on the side of caution.

Yesterday marked the five year anniversary of the passing of my grandmother.  I miss her every day.  She was tough.  She also had a huge heart and she made me laugh.  I learned a great deal from her and her interactions with family.  But what I learned most from her is that you have to take life in stride.  Enjoy the small things in life.  Eat dessert after dinner.  Go for a walk.  Drive to Old Silver Beach and watch the sun set.  Someday you may look back and realize they were the big things.  I try to keep her perspective.  I’ve said it before, I know my attitude sets the tone for some many others and many of them are not my own children.

When we were kids, Gram would tell us to lick our forks.  She’d say “the best is yet to come.”  She was talking about dessert.  Well, I think of that often and I remember to lick my fork.  She was right, the best is ALWAYS yet to come.  fullsizeoutput_4d77.jpeg

 

You’ve got to put your mask on first…

Every flight, passengers are admonished that in case of emergency, they must secure their mask before they can assist someone else. I’ve heard this ad nauseam for years. I know, I’m no good to any of my children if I can’t take care of myself. I try.

Last summer I started having horrible pressure in my right eye. We were on vacation and I honestly wanted to have a melon baller delivered to our resort so that I could scoop my own eye out. I went to my eye doctor. He changed my prescription. It’s still there. Additionally, my hair (I have a lot of hair) was coming out in handfuls. I had awful anxiety. My PCP kept telling me it was stress and I needed to relax. Oh, okay, no sweat.

By Halloween, I was convinced I had a head full of thick, wiry fishing line underneath expensive hair color. In November, I was standing in my classroom and felt like I got punched in the chest. It took my breath away.  At the 2pm bell I drove straight to my PCP. It’s stress. You need to relax.

To make a long story short, in early a March, Eric and I were sitting in a doctor’s office at MGH. Two doctors met with us; I have Graves’ Disease. Holy God!!! Am I going to look like Marty Feldman?!?! (Go ahead, Google him….I’ll wait.)

I asked what triggered this. They both indicated stress. “Have you been under any stress lately?” I looked to my right at Eric who just two days before had a sudden onset of Bells Palsy. The right side of his face was numb and drooped. His right eye didn’t blink. Without hesitation, we both replied “no, not really.”  I winked at Eric, he couldn’t wink back.

We got to the parking garage and cracked up.  If they only knew!  I mean, we were crying laughing. Sometimes you don’t realize how much stress you’re under until you take a pause.

This April vacation we won’t be relaxing in warmer weather like the years past.  I’ll be having my thyroid removed.  I need to take better care of myself.  If I don’t, I’ll be no good to anyone else.  It’s pretty sage advice for all parents.57671580582__23A00EB1-441A-42D0-830C-3865D33C63E9