autism spectrum disorder

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The View From Here..

School ended today at 12pm. By 12:20pm I had four extra kids in the house – two friends of my son and two friends of my daughter. They all came home from school with us and will all spend the night. It’s a huge “Welcome to Summer” celebration.

Earlier today as I was leaving work and heading to the grocery store to stock up for 6 hungry kids, I told my co-workers that this party was either the best idea I have ever had, or the worst. So far, so good. They ate enough food to feed a dozen kids at lunch, they’ve played video games, had water fights, and nerf battles. All together in a big pack. It’s been so much fun to watch (as I have been attempting to get in a couple more hours of work sitting in the yard.)

Right now the boys are in the living room playing video games, and the girls are in my daughter’s room whispering and giggling. There is peace and harmony and joy in the land of preteens as they ease into their summer break. And the current view from my outdoor “office space” is this…

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That is the remains of water balloon fights, nerf battles and hot tub dunking. It is the loveliest, most joyful mess I have seen in a long time. Its existence proves how far my son has come since this time last year. The beginning of last summer was right after my son had hit rock bottom in his battle with anxiety, panic and depression. While this was clearly hardest on him, his behavior, actions and choices for many months last spring and summer had the net result of our entire family being hostage. We did not have people over because there were too many possibilities for the visit to end poorly.

This time last year, we were all just trying to survive. This time last year, the long and empty days of summer seemed desolate and daunting. This time last year, there was no celebrating.

But today there is laughter, and joy, and fun, and friends, and beautiful messes. Today there is celebration and eager anticipation for what the summer will bring. Today the view from where I sit is incredibly good.

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Look Closer…

One year ago today….

This was a picture perfect day as captured from the rooftop deck at the Monterey Bay Aquarium. I remember the first part of the day being a lovely family outing. And there are dozens of other pictures taken that morning which support my memory. 

But shortly after this picture was taken, our son had his first debilitating panic attack. In the middle of the aquarium, we all had our first experience with the wave of panic washing over him and sending him to the floor in a fetal position. It was possibly the most frightening moment of my life. And was certainly a turning point in my son’s story. 

Just 2 days before this picture was taken, we had made an appointment with a psychiatrist to discuss the possibility of medication. If there was any doubt left lingering that our boy needed the support of medication, that disappeared as we helplessly watched him first huddling on the floor in the middle of a crowd and then watched as he ran searching for an exit from the building. 

That day marked the beginning of a long series of days and weeks and months that were colored by fear and exhaustion for all of us. Because even though medication was only weeks away from this date, it took a long time for us to see and feel the effect. 

Everything you just read? That’s what all flashed through my head as I saw this picture pop up in Timehop this morning. It was an awful lot of emotion and memory before 7am. 

But then I looked closer. I looked at the picture again, and I saw how far we’ve come this year. On that day we didn’t even yet have an actual diagnosis. We were still searching and trying desperately to get to an answer before something went terribly wrong. On this day, a year later, we have the diagnoses and answers and experience to better handle whatever his brain or life might throw at us. We are so much better equipped. And while we know there are likely more dark days to come (that will masquerade as sunny and picture perfect), we also know we can fight that darkness. 

So look closer. Look closer and you can see both the broken and the beautiful. 

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Pasta – With a Side of Perspective and Persistence

A dyslexic, an Aspie and their mother are sitting around a table…

That almost sounds like the start of a bad joke. But it isn’t. It was dinner time in our house last night.

On most weeknights, dinner is a rushed affair in our house. We eat early so that anybody who has an evening practice, rehearsal, scout meeting, etc. heads out with a full belly. The early meal means generally my husband isn’t home from work yet, so most weeknights it is just the kids and I around the table.

Last night, as the three of us ate our buffalo chicken pasta, my son asked my daughter a series of questions about dyslexia – what do words look like to her, does she see letters backwards, does it make her sad that she has to struggle to decipher text, does it make her nervous to use the tools she’s been given to help in class?

In response to that last question – does it make her nervous to use the tools she’s been given to help in class? – she talked about how some of the kids in her class complained to the teacher that she gets to use something that they don’t. And that one statement provided an opening for the most amazing series of statements from my son…

“They’re just jealous. But you shouldn’t care. You see the world differently from them, and that’s ok. It’s just who you are.  Look at me. I don’t like to think about my anxiety and panic disorders as a mental illness. They are just a part of me, and that means I see the world differently. And my autism isn’t bad. It helps me see things other people can’t see. It’s part of me, and I also think it makes some people jealous of me. Just like some kids in your class are jealous of you. It’s ok. Just be you. Yum. This pasta is good.”

And then they started talking about a YouTube channel they both follow as they finished their pasta.

I don’t know how long those thoughts have been running through his heart and head. I don’t know what prompted him to speak them aloud in that exact moment. I don’t know when or if I will ever again hear some version of those statements come from his mouth.

I do know that in  hearing him say those things – “It’s ok. It’s part of me. Just be you.”  – I was also hearing that somewhere in his heart and head he is developing perspective and persistence. I do know that in that moment he gave me hope. I do know that, even if it isn’t always apparent, he is becoming increasingly comfortable with who he is and the space he occupies in this world.

The words are simple – “It’s ok. It’s part of me. Just be you.” – but the message is universal. We don’t always get to choose the circumstances that shape our reality, but we do get to choose how we respond. My husband and I work hard to make sure both of our kids are developing the persistence and perspective they need to thrive in life. We work at it everyday, but we aren’t always sure we are getting through. At dinner last night, I was certain that we are getting through.

 

 

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On the Bookshelf -Love That Boy: What Two Presidents, Eight Road Trips, and My Son Taught Me About a Parent’s Expectations by Ron Fournier

I am a voracious reader. I love words. I love stories. I love ideas. I love to escape into a good book.

Some of what I read is for pure pleasure, some of what I read is to help me be better at my church job, some of what I read is to expand my understanding of our world, and some of what I read is to help me figure out how to help my polar opposite kids navigate this world. When I come across a book that I think is insightful or important in some way, I am going to share it with you all – just a glimpse of what is on my bookshelf.

“Love That Boy: What Two Presidents, Eight Road Trips, and My Son Taught Me About a Parent’s Expectations” by Ron Fournier

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My son is a current events and news junkie. It has been a challenge for us to find outlets for his interest that provide balanced and non-sensationalized reporting. The only televised news he is allowed to watch without parental supervision is the News Hour on PBS. Several months ago he was watching the News Hour and I happened to walk through the room during an interview with journalist Ron Fournier. They were talking about his recently published book “Love That Boy: What Two Presidents, Eight Road Trips, and My Son Taught Me About a Parent’s Expectations.”

I can’t say for certain what caught my attention and caused me to stop and listen. But something did, and I found myself standing in a room with my son who lives with a level 1 autism spectrum disorder (ASD) and my husband, listening to Ron Fournier talk about his own son who lives with ASD and his own emotional and physical journeys that changed his relationship with his son. I was riveted, and I instantly went to my computer and added the book to my Kindle.

Several weeks went by before I had an opportunity to begin reading the book, but when I did I found it difficult to stop reading.

Ron Fournier is a long time political columnist. He started his career in Arkansas covering then governor Bill Clinton, followed President Clinton to Washington DC, and covered the next 3 presidential administrations. He is also a son, a husband and a father to 3 including his son Tyler. This book is part fantastic reporting and part memoir. It is full of historical and social background, current research on childhood development and interviews with other parents; right alongside a recounting of his deeply personal journey to a stronger relationship with his adolescent son.

The book is set against a backdrop of a series of road trips Fournier and his son Tyler take to visit the homes and libraries of a handful of past US Presidents, including personal meetings for Tyler with both President Clinton and President GW Bush. Along the way, Fournier and Tyler forge a deeper and more empathetic relationship.

As I read, I could see so much of my own son in Tyler and so much of myself in Fournier. This is a book that broke my heart and then filled it back up again. “Love That Boy” is everything I write about on this blog – Family. Real. Raw. Broken. Beautiful. It is brutally honest look at parenting – not just parenting a neuro-divergent child, but parenting any child. It is a story of struggle and grit and love, and a family coming out stronger on the other side. It is a love letter to the relationsip bewteen parents and children everywhere – with the added bonus of some really amazing reporting on history, society and presidents.

 

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If Not Here, Then Where?

I’ve lost count of the number of hours I have spent in the waiting rooms of doctors, therapists, and specialists in the past 2 years. I would wager that the total number is well into the hundreds. Hour, upon hour, upon hour has ticked away while I sat waiting for my son.

Some of those waiting rooms are crowded, busy, and unpleasant. Some are spacious, peaceful, and comfortable. All of those waiting rooms have other parents, waiting in chairs for a son or daughter to finish whatever therapy lies on the other side of the waiting room door. Often, those waiting parents also have other children with them – these are the siblings for whom sitting in a waiting room is as common as hanging out at a sibling’s sports practice. Almost always, my daughter is sitting with me in those waiting rooms.

Just this week,  my daughter and I were sitting in the waiting room of my son’s psychologist. It long ago became our habit for my daughter to get as much homework done as possible while we are waiting. On this particular day she was tired, and the homework felt overwhelming, and she was coming up with every excuse possible to avoid having to do the work. She and I went back and forth half a dozen times, before I finally told her I didn’t actually care if the work got done, but if it didn’t she was the one who would have to face her teacher the next day. That was enough to get her to finally buckle down and do the work.

As I settled back into my chair and picked up my phone to check my email, I noticed the one other mother in the waiting room surveying me with a look that seemed to ooze disapproval. What was the source of the disapproval? My daughter and I weren’t arguing – it was a conversation fairly typical of mothers and 4th graders everywhere. So I would think that was not the issue. It could have been the fact that I told my almost 10 year old that she needed to take responsibility for her actions, or it could have been that we were even having that conversation in a waiting room. It could have been I was projecting and she didn’t care at all. I’ll likely never know. After I vented my frustration to my husband via text message, I took a deep breath and focused on my phone. My first rule of survival in these waiting rooms long ago became “keep your head down.”

Several minutes later, I heard the boy who was with the woman ask a quick series of questions…”Why is he still in there? What’s taking so long? Why does he have to keep coming here? Is it because of what happened at school? Is he going to be ok?” To which the woman replied, “Shhh. Not here. There are other people around.”

Not here. There are other people around.

Not here – in the waiting room of an office that is shared space between a psychologist and a psychiatrist.

There are other people around – one other mother and one other sibling, who were also waiting for a child on the other side of the closed door.

If not here, then where? And if not in front of these people, then who?

Maybe I shouldn’t be keeping my head down in those waiting rooms. Maybe I should be looking around and really see the other parents who are very much like me in many ways. And maybe I should be inviting conversation, fostering a safe space, and creating community.

If not here, then where? And if not in front of these people, then who? There is no “maybe.”

There is so much power in naming the struggle – every time I type or say some version of “my son has level one ASD, an anxiety disorder, and a panic disorder”, it becomes a little less frightening. I am actively fighting stigma online and in (most parts!) of my “real” life, but by not saying something (anything!) to another parent in a waiting room, I am perpetuating stigma.

I don’t know if I will even come across that other mother again. But she could really be any other mother (father, grandparent, guardian) in any other waiting room. So this is my vow to her…

I vow to not keep my head down in those waiting rooms anymore. I vow to be open to conversation. I vow to create safe space for other parents who are so very much like me. I vow to foster community. I vow to be a stigma fighter all of the time.

That is my vow, and I challenge every person reading this to make it your vow as well. Join me and be a sigma fighter.

Because I never again want to hear, “Shhh. Not here. There are other people around.”

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Once Upon A Time…

growing_upOnce upon a time, there was a 10 month old baby boy who took his first assisted steps up and down the aisle of a church during Vacation Bible School week. The hands he held were those of a sweet little girl who would grow up to be one of his favorite baby sitters, as his mother was busy teaching music to the other children.

Once upon a time, there was a not quite 3 year old boy, who splashed in the water left over from VBS games along side the other toddlers of the church and left a permanent dent in his forehead when he collided with a pew.

Once upon a time there was a not quite 4 year old boy who finally got to be with the “big kids” during VBS. He decided he was “too hot” during a music performance for family, and started to strip naked in front of everybody. All while his mother looked on helplessly since she was in the midst of directing the musical efforts of all the other children.

Once upon a time, there was a preschooler, who grew to become a young elementary aged boy. This was a boy who loved VBS and looked forward to the week every year. This was a boy who excitedly waited for the day his parents would add the latest round of VBS music to his iPod.

Once upon a time there was a 9 year old boy, who still loved VBS, but no longer loved being around people. He spent all day every day begging his mother to let him leave, but his mother was in charge and so he was “stuck”.

And now there is no more once upon a time.

Now we are in the here and now. Now there is an almost 11 year old, teetering between childhood and adolescence. Now we are in our current reality, where so many safe places, and loved activities have been stolen and buried under the weight of anxiety, panic & depression. Now we are halfway through a summer where that boy has only been able to attend one week of day camp, because the world is still more than the can handle most days. And now we are halfway through VBS week.

We’re halfway through VBS week, and my son has been there as a helper every day. Three days in and he’s doing great. He’s not the best helper ever, but he’s doing the best he can and the adult he is helping understands his situation and is doing everything she can to help him have a successful week. He is doing such a good job of avoiding the large crowds of kids and adults at the opening and closing times, that one adult I spoke to today didn’t even realize he’d been there all week. But he’s there, and he’s enjoying being there.

I am confident that as recently as two weeks ago, he would not have been managing as well as he is this week. With every day that passes, I am beginning to see that the current combination of medications may actually be doing the job they are supposed to be doing. The hard edges are softer and the things that trigger him are fewer. I have seen glimpses of joy, and laughter, and peace in my boy this week. I have seen glimpses of that that boy who once loved VBS more than any kid I have ever met.

Once upon a time there was a boy who grew up in a church, and loved everything and everybody inside that building. Once upon another time, the darkness of anxiety, panic, and depression made that church and it’s people feel unsafe to that boy. Once upon another time, with the help of his family, that boy fought back and reclaimed the joy the church once gave him. I know we’re not anywhere close to a happily ever after, but seeing my son smile again as I work through VBS has been an amazing blessing.

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To the Staff at Horse Camp

We’re halfway through summer break, and my son finally was able to attend and enjoy a day camp this week. He and my daughter both spent the week with my parents and went to a horse camp. It was the one thing he REALLY wanted to do. They attended last summer, and talked about it all year long. Last weekend he was excited, but also anxious about that “what ifs.” He’s doing a little better most days, with the panic attacks coming further and further apart. I was nervous for him, but knew he needed to do this. So he did. And it was great. And he came home full of happy stories of beloved horses and a new friend. And for that I am so, so grateful!