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.