So. Heavy.

Today the weight of being a parent with two autistic kids was too heavy. Crushing the air out of my lungs. Slumping my shoulders under its sheer mass. Threatening to splinter my spine.

How can I possibly keep doing this all my life, I wonder for the hundredth or thousandth or millionth time. How do people DO this?

I had a disagreement with a coworker about a completely benign issue. Rather than rely on my inherent rightness, which is my usual MO in difference of opinion situations, I wanted to scream, "I don't have time for this crap. Don't you know I am raising two autistic sons???"

On another day, the press release a coworker forwarded wouldn't have set off the gnawing fear in the pit of my stomach. It was about Special Needs Trusts, an issue of interest to one of our clients, forwarded as an FYI. But today, when I opened the email, I found myself panicking. I don't have ONE Special Needs Trust set up, let alone TWO. I find myself in the absurd position -- albeit very briefly -- of wondering what's worse: Bryan and me dying first and leaving our sons to navigate the world without us, or them dying first and leaving us desolate and alone?

Like I said, absurd. Crazy. Not worthy of contemplation.

Eventually I am able to recover my composure to a point I can function without the constant threat of tears. I can push the panic to the back of my mind and focus on my mundane "to do" list. Pay bills. Check. Book a flight for an upcoming presentation in Dallas. Check. Review my notes for the pitch I'm doing tomorrow. Check. Go to my meetings with Hill staff and talk about funding for helicopters or whatever the heck it is I'm lobbying today.

But it's still there. Just below the surface. That panic. That familiar, helpless feeling. No matter how many lists I make or how many therapists I engage, I can't escape it.

How? How can I do this?

Tomorrow will be better. It has to be. Right?

Back to School

When Archie was born, and I was planning his future, I mentally penciled in "kindergarten" for fall 2016.  Of course, that was before.  One of the more consequential decisions we have made since Archie's diagnosis was whether to stick to that penciled-in plan and send him to kindergarten this fall.  It wasn't a question of age -- he turned 5 in May, so he's old enough.  It was a question of whether an additional year would get us closer to our goal of having him in a mainstream classroom with typical peers -- and what that additional year would look like.

This is probably a good time for me to step up on my soap box for a moment.  One of the most challenging things for me about being a parent of an autistic child (or children, in my case) is the expectation -- nay, the FACT -- that I am the de facto expert on what's best for my son.  Using my extensive professional training (which consists mostly of internet reading and being bossy by nature), I am responsible for creating a program that will meet all of his needs.  It's really laughable, when you think about it.  All of the therapists and teachers our sons work with have advanced degrees and decades of experience, but ultimately, my husband and I are the case managers.  For each child, on an ongoing basis, we 1) assess our son's needs, 2) find, evaluate, and choose the appropriate intervention for each need, 3) determine the number of hours per day or per week our son will spend doing each intervention, and 4) coordinate between all the different therapists, teachers, and other aides.  When kind friends say that our boys are so lucky to have us making these decisions and caring for them, I can't help but think -- really?  This amateur hour showcase is the best they can expect?  It's sort of insane.

But I digress.  Off the soapbox.

For the 2015-2016 school year, we decided to split Archie's day between a private preschool for typical kids and the special ed preschool program in the public school system.  We visited a lot of private preschools before the school year started last year, and we settled on Burke Presbyterian Church Preschool (BPCP).  In addition to an incredibly loving, devoted staff of wonderful people, the teacher for Archie's class has a special ed background, and the aide for the class has a son with autism.  Perfect situation for us.

Archie's experience there was such a good one.  The interaction with typical peers was so incredibly valuable.  His social skills grew by leaps and bounds.  There were certainly some painful moments as we saw Archie interacting with kids whose social skills surpassed his.  That's a polite way of saying that Archie liked to bark at the other kids instead of talk to them.  But these kids were so kind and so patient.  They invited Archie to their birthday parties.  They told him "hello" and "goodbye" every day.  They noticed when he wasn't at school and were sad when he had to leave early.  We had never had that kind of experience before.  But we were confronted with the uncomfortable realization that while he had made so much progress, the distance between his skills and those of his peers was still significant.

We went through the IEP process with the county earlier in the summer as though we were going to send him to kindergarten, and in a 27-hour school week, they recommended he have 10 hours of "push in" (special ed teacher working with him in the mainstream classroom) and 10 hours of "pull out" (special ed teacher working with him in a special ed classroom) per week.  That isn't the "mainstream" experience we were hoping for, so we decided to hold him back a year.

For this year, we are creating our own program:

Pre-K at BPCP -- 5 mornings per week, plus 3-4 hours per week of "enrichment" activities
Public school special ed preschool -- 3 afternoons per week
ABA -- 6-8 hours per week
Occupational therapy -- 1 hour per week
Social skills group -- 1 hour per week
Swimming lessons -- 30 min per week

Will this rigorous schedule be enough to catch Archie up with his peers?  We have no idea.  But this is the only time we have a "free pass" to hold him back.  We're taking it and giving it our best shot.

Two for two

This week my husband and I got confirmation of something we have suspected:  like his older brother, our 3-year-old son Max has autism.  While not a surprise, it was still difficult to hear.  This is certainly familiar territory, but maybe more daunting as a result.  Thank goodness for Diet Coke and chocolate at times like these.

Adequately describing the emotions that have accompanied this diagnosis might be impossible -- and any attempt will be difficult, and heart-wrenching, and guilt-inducing.

There is a lot of guilt in feeling sad, because the implication is that I want my son to be something different than what he is.  Perhaps the best way to describe it is like a mourning process.  We are quite literally mourning the future we thought our son might have.  That's not to say he won't have happiness, success, contentment, and a wonderful life.  But it will be a different life than we envisioned for him, and it will be much more difficult for him than for many of his peers.  Watching your child navigate his way through the regular ups and downs of life is hard.  Knowing he will have to do so with a significant lifelong disability is heartbreaking.

So now we start trying to map out his treatment plan the way we have tried to map out his brother's.  Preschool Autism Class (PAC)?  Check.  He's enrolled, and school starts September 6, and it's a 27-hour-per-week program.  Occupational therapy?  Maybe, but probably not for now.  Speech therapy?  He needs it, because most of his communication is echolalic (repeating back what is said to him), but are there enough hours in the day?  Applied Behavior Analysis (ABA) therapy?  Assessment scheduled for this week to determine how much he could benefit.  Play dates with typical peers?  A must, but let's see how the rest of his schedule shakes out first.

Managing my boys' schedules is very much a second full-time job that involves lots of scheduling, lists, coordination, and my favorite -- spreadsheets.  I think it is a blessing that I am obsessed with organization and like making all the pieces fit.  Although fewer pieces would be nice.

Hug a teacher

A few days ago, an "on this day" Facebook memory from two years ago popped up featuring this picture of Archie with his first Preschool Autism Class teacher, Jen, at the end of the summer 2014 session.

It brought back such a flood of memories.  Jen was the kind of teacher who ruins you for all other teachers -- the kind of teacher against whom all others will be measured.  We were completely clueless, scared, worried and uncertain when we met Jen and sent Archie off to her class.  Jen not only is an incredible teacher in the classroom, she went way above and beyond OUTSIDE the classroom.  She came to our house once a month to help us implement strategies at home to help Archie with everything from brushing his teeth to sitting at the table for dinner.  She was always a phone call, text, or email away, and was incredibly responsive.  Bryan and I had heard from other parents with kids on the spectrum about how difficult it was to get their kids accommodated, and our experience with Jen made us incredulous.  Little did we know, we hit the jackpot on our first attempt.  She changed Archie's life and changed our lives forever.  She taught our little boy how to talk and so many other skills.  She loved him and was genuinely invested in his success -- and in ours!  We are forever grateful that Jen was there to hold our hands during what was otherwise a very dark and difficult time in our lives.

Here's to good teachers!

The intellectual disability conundrum

I face a constant conundrum with my boys.  They are different from other kids.  It's becoming more apparent as they get older.  I don't worry so much about telling THEM when the time comes.  But when it comes to everyone who isn't them, and we're in a social setting, I am always wondering:  should I announce their difference?  Or just roll with it?  

Right now, they are so cute that sometimes it takes a while for their differences to be noticed.  But what about when they're in the awkward teen years?  I can't tell you how many times someone has said, "Oh, your son doesn't LOOK autistic."  Not a great thing to say to a parent of an autistic child, but also true.  His disability doesn't show in his looks so it's not as easily discernible to others.

It's now pool season, and we are proud owners of pool passes for our community pools.  Archie, age 5, LOVES the pool.  He's fearless.  He'll jump in the deep end, keep his head underwater, and generally scare the living daylights out of his parents in the pool.  He wants to interact with other kids.  That interaction isn't always....appropriate. Usually it's relatively harmless, like stealing the ball from a game of catch in an effort to get other kids to chase him.  However, sometimes it's a little more serious.

Last weekend, we were at one of the neighborhood pools.  We were in the kiddie pool when Archie went over to a little girl who was sitting down, grabbed her ankle, and put it toward his mouth.  We thought he was going to bite her and jumped in to stop him.  She was terrified.  He was upset.  I told him he can't bite and he said, rather indignantly, "I am kissing a boo boo!"  The girl had a scrape on her ankle, and Archie -- quite logically, based on all the times his boo boos have been kissed -- wanted to make her feel better.  A gesture too adorable to be mad at, but misunderstood enough that the girl was traumatized.

Max, who will turn 3 years old in July, is a different story.  Very cautious and reserved.  Still different, but mostly just playing with the pool toys a little oddly, or off in his own world.  Basically not threatening, so easier for other parents to dismiss.  

I constantly cycle between the same thoughts in any public setting like this. 

"I should just tell everyone so they know the deal."

"I should just let it play out and intervene in the case of trouble."

Selfishly, I don't want to endure the self-righteous glares from other parents who think I'm letting my kids behave badly, when in reality, they are both doing amazingly well.  But I also die a little inside every time a parent or kid looks at my boys and judges them.

I want my kids to have every accommodation they need to be successful.  But I also want the opposite thing -- I want them to be treated exactly like every other kid.

Is that so much to ask?

Birthday surprises

My husband and I -- just like many other parents who have children with special needs -- had some disappointing birthdays and Christmases before we learned how to calibrate our expectations of our autistic son.  I remember his second Christmas, when he was about 18 months old, being so disappointed because he showed almost no interest in any of the "age appropriate" gifts we gave him.  He just wanted to lay on his stomach, rolling and unrolling the edge of the area rug.  Over and over again.

We've gotten better.  We know our son better.  We've adjusted our expectations.  It's not that we expect less -- we expect DIFFERENT.  

So this year, for his 5th birthday, we decided it was time for two things that typical kids do: a bike with training wheels, and a birthday party with friends.

The bike was a success.  He was thrilled -- if a little nervous -- when we unveiled it.  He wasn't completely sure he wanted to get on it, but he definitely wanted to be near it.  When we put on his helmet, we told him it was time to go up to the end of our private road.  Instead of getting on the bike, he said, "I will just run."  And off he went, wearing his bike helmet, running at full speed.  

To be fair, we didn't say, "Let's get on your bike and go up to the end of the road," so what he was doing was perfectly reasonable.  He eventually got on the bike and let his dad push him around a little bit.  

But the real story was the birthday party.  This wasn't just any party.  This was Archie's Birthday Party.  Capitalized.  Taking cues from various parenting-a-kid-with-special-needs blogs, we included elements we knew he'd like -- friends of all abilities, light sabers, cupcakes with lots of frosting, sensory bins, train tables, and a bubble machine, to name a few.  But more important, we DIDN'T include elements that we knew wouldn't work for him.  We didn't have any formal plan.  There were no games.  There were no expectations that he would have to fulfill.  He could go anywhere and do anything in the house.  

You know what?  It was a madhouse.  Complete insanity.  We invited parents and siblings, so we had a total of about 35-40 people over the course of two hours.  It was pouring rain that day so we converted the garage into what my grandmother might call a "rumpus room."  

But it was a HIT.  Archie had the best day.  He was so excited every time a new friend came, and had to make sure I understood that a kid who he had previously only seen at school was IN HIS HOUSE.

The real measure of success with Archie is how much and how often he talks about an event after the fact.  For many nights afterward, at bedtime when I ask him if he had a good day, he would say, "It was my birthday one time, and all my friends came.  And I played with light sabers and ate blue frosting.  And cousins were there."

Success.

Bedtime stories

Here's a glimpse into my life with an almost 5-year-old son with autism. Instead of asking for a bedtime story, as a "typical" child might, this is the sight that greeted me when I came into his room tonight.



He wanted me to read these 6 specific books, in the exact order he had laid them out. He handed me the first book, made sure that I read the title of the book before I opened it, I held it with two hands, and I turned each page completely before beginning to read the next. He listened closely as I read, making sure I didn't miss even one word (did I mention he had all of these books memorized within a week of getting them?), and pointing out the missing words if I skipped them. As I finished each book, he put it carefully back in its place in the lineup, taking a moment to make sure all the edges were as parallel with the other books' edges as the bumpy mattress top allowed. When all had been read, he stacked them up, in order, put them away, and proceeded with the next step in his night time routine. Sometimes I feel like Archie is being patient with me, trying to teach me to see things the way he sees them. And sometimes -- even for a fleeting moment -- I can see it. And it's beautiful.