Name It

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The Is Us; 2017

One year ago today I hit publish on “a little project” I’d been working on.

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Today I went back and read the post that started what has become an incredible journey. Take a peek and see where we started.

We’re in a much better place in general today than we were when I wrote that post. We have words to name things in a way we did not at this time last year. And we have all found our own voices and own ways of narrating our story for the world. As a family we are changing the dialogue. There are still dark moments, hours & days. But the light spaces in between have stretched. There is still a lot of who we are to be found in that original post, but it’s not where the story ends.

And as for me and that “little project”… 12 months, 76 blog posts, 6 articles published on The Mighty (including one co-authored by my son), 7,000 people in 60 countries reading those words and hopefully finding encouragement to find their own voices.

Here’s to another trip around the sun…

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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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Me and My Shadow

Several months ago, I developed a habit of getting up early in the morning and walking. I take the same route every day – just a little over 2 miles around and through my neighborhood – and usually start and finish the walk at approximately the same time each day. In other words, there is a predictable pattern to my walk, that has really only been modified by how much daylight there is, or isn’t, depending on the time of year.

This morning, I was awake earlier than normal. My husband had an early flight out for a business trip, and since I could not fall back to sleep after his alarm went off, I decided to get out of bed and walk earlier than normal. I walked my same route, but because of the earlier time it was still quite dark for most of the walk. My walk was lit by the streetlights, instead of by the new light of the morning like it is normally.

About half way through my route, I turned a corner and was startled by a shadow on the sidewalk in front of me. It was my own shadow, cast by a streetlight. But I wasn’t expecting it, and for a second I truly was scared by my own shadow. I quickly realized what it was and had a little chuckle at myself. But then I began thinking about what it really means to be scared by your own shadow.

What if the “shadow” is the part of each of us that we dislike the most? What if the “shadow” is the circumstance that may be beyond our control, but still shapes us? What if the “shadow” is the thing we can’t change?

The shadows are the things that follow us around, no matter how hard we try to either get rid of them, or ignore their existence.  The things that are always there,  because whether we want to admit it or not, those things are a part of who we are. And those things we don’t want to acknowledge, or name, or bring into the light are as much a part of who we are as the things we do acknowledge, name and shine a light upon. Those things are our shadows, and our shadows are connected to us.

We all have shadows. Mine are a self doubt that is deep and wide,  and the exhaustion (both physical and emotional) that comes from living with Fibromyalgia. That’s all a part of who I am. Those are my shadows.

But in order for there to be a shadow, there must first be light.

 

 

 

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It’s Okay to Cry

We’re in Philadelphia for a few days. As we walked around near Independence Hall today, we spotted this…


As my son walked past it he said, “Sometimes you have to cry. It’s okay to cry”

Yes it is. 

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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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The Letter I Delivered Today

The premise of this blog is that we all – every single person – faces internal challenges, struggles and obstacles. That is reality. I started back in April writing about how our family  is so much more than you see on the surface. Much of what we deal with on a daily basis stems from my son’s struggles with anxiety and panic disorder, but he is not the only one on our family who struggles.

Our daughter is in 4th grade this year. We have suspected for a long while that our daughter may have dyslexia. Every year since Kindergarten we have asked some version of the question “could she be dyslexic or have another learning disability?”, at parent-teacher conferences. Every year since Kindergarten, her teachers (all of whom we have LOVED) have given us some version of the answer, “she is approaching grade level standards, she should be fine – and just because she isn’t her like her brother, you don’t have to assume there is a problem.”

Her brother was an early and prodigious reader. He basically taught himself how to read at age 3 and hasn’t stopped since. He inhales text and has remarkably accurate retention of everything he reads.

Our daughter has never enjoyed reading. It has always been difficult for her, but she is a fighter and she is incredibly intelligent, so she has compensated and persevered. Through lots of hard work, she has made it appear that there isn’t  problem.

Appearances can be deceiving, and eventually facades crack. One week into the brand new school year, she cracked. Every day this week there has been a tearful explanation of how she “can’t” read like everybody else and how “dumb” she feels. She is coming home from school mentally exhausted from the effort of trying to keep up so nobody “knows how I can’t read.”

Heartbreaking.

To be clear, it’s  not that she “can’t” read. She can read. And she can at a level that the state of California deems to be “approaching grade level” for a 4th grader. While there is nothing wrong with that level of reading fluency for a 9-year-old, it is incongruous with her achievement in other areas. And even more startling is how scared and upset this is making her.

We have suspected for almost 5 years that there is a problem. We are now certain that there is a problem, and we need the school district to do something about that.

The school district was less than helpful in getting our son the assessments, support and accommodations he needs to be successful in school. We aren’t big fans of the special education department at the school district. My head hurts just thinking about how hard it was to get my son what he needed. The last thing we want to have to do is deal with them again – but we will.

This time though, we have the benefit of hindsight. We know what we would have done differently when we started down the path of getting assistance and accommodations for our son. So this time around we started the process with a letter. A letter that makes it clear we are advocating for our daughter, we know what the district is obligated to provide under state and federal law, and we aren’t going to accept anything less than everything the law dictates.

The letter is full of references to the Individuals with Disabilities Education Act (IDEA) and section 504 of the Rehabilitation Act of 1973. The letter shows our understanding of the timeline that the district must follow based on those laws, and indicates that we will be holding them to that timeline for the assessment and plan. The letter states that in addition to the typical school district evaluations, we specifically request that all of the skill subsets indicated in a possible dyslexia diagnosis be evaluated including: spoken language skills, word recognition, decoding, written spelling and expression, phonological processing, rapid automatic naming, reading fluency, reading comprehension, and vocabulary knowledge. And the letter ends with us letting them know that we are not opposed to any general education interventions (her teacher has already begun trying to accommodate her in the classroom, because she is amazing!). Those interventions may be done simultaneously with the assessment for special eduction, but should not slow down the mandated time lines for assessments under IDEA.

That letter was not pleasant to write, but it needed to be done. I hand delivered that letter to our school principal this morning, and emailed my daughter’s teacher to let her know the letter and the request for assessment were now official. We’re on the clock. And now we wait.