If motherhood imparts traces of omnipotence, even the rhetoric of special needs motherhood raises the bar. Often we are called “superhuman” or “saints.” The “I don’t know how you do it” that special needs mamas hear implies that we must have some other-worldly qualities to help us make it through the day. The notion that we doubt ourselves, keenly feel our limitations, or labor over our decisions simply doesn’t line up with the power necessary to meet the challenge of our daily tasks. – Vicki Forman

This mama says exactly what I would say if I could write like that. I am not a saint. I am not a superhero. Sometimes I’m not even a very good mama. I get tired of sensory issues and say things like “Just eat” or “Just climb the damn stairs.” I get jealous that my friend’s little boy, who is a year younger than the J-man, is speaking AND eating table food. I get scared about what is next, and so I procrastinate instead of learning something new, because then I have a reason for failure, instead of being a failure. I read random books as a form of escapism.

However, I do have superpowers! I can call upon the power of the boob at a moment’s notice, and my super-sensitive-nose has saved us from taking the J-man somewhere moments after he’s pooped. I can sing many songs in many keys, and have learned to vary the pace so he can sing along. Mostly though, I can love him.

That’s my best superpower.

Some days, the best you can aim for is to make it to bedtime and hope that nobody pees on the carpet, and even that is negotiable. I’ve been so dead tired lately that even typing this is a real effort. I’ve got all the classic signs of being way over-stressed. And I think I just stared blankly at the screen for five minutes before writing this sentence.

Some have encouraged me to write down a few good things J-Man has accomplished even in the midst of the really bad days. Since I wouldn’t call him having digestive issues and whining constantly for the last several days worth celebrating, I had to try a bit harder. I just feel like wallowing in self-pity, and the sage advice I received once that “when life gives you lemons, remember to lead your targets and follow through with your throws” seems a lot more appropriate. Regardless of your strategy, whatever works is good enough.

In OT today, I watched him actually ride a plastic rocking horse for the first time. He pushed back and forth a few times and leaned along with it some to build up a little momentum, too. For him to coordinate all of the motor functions needed to rock that thing on the floor by himself was quite an achievement. He even sat on one of those pushable riding toys and pushed it around in reverse using his feet. He hates those things, so again, this was a real achievement. It was only a few minutes of the day (though he did well in OT overall today too) but it has gotten me through most of it.

It’s not really despair or hopelessness by any stretch. I think it’s just sheer exhaustion with the gravity of knowing that we have a couple of very busy, very stressful months to go before it lets up much at all. I look at all the to-do lists for preparing for his IEP, all the people we need to contact, all the stuff we need to write up, all the day-to-day stuff we need to do, all the projects on my work lists, all the stuff that needs fixing or cleaning around the house, the weed-infested yard in front of our house, some green junk growing on our deck, all the lint stuck in the dryer exhaust which vents out from the roof, and God knows what else, and in the moment it all feels like too much. I notice a loose toilet paper roll holder and feel like sobbing. That’s just how it’s been.

It’s like getting to mile 17 of a marathon and realizing you just hit the wall, except you can’t just turn right, get in the car, and go home. Deciding not to run isn’t an option. In our area of the world, people often call it being ‘bone-tired’. That sounds about right.

If you go looking for it, some nugget of something will pop up and hopefully nudge you a while longer. I forget who it was, but someone once said something to the effect of, “We can only see in the dark with our headlights a few feet in front of us, but we can make the whole trip that way.” From some recess of my brain, that came up and bumped me along a little bit. I guess getting through the day is sometimes just about driving a couple of feet at a time.

Not long after, I read this quote in a book about typography of all things (it was an example in the book - no idea who said it): “Today’s mighty oak is just yesterday’s nut that held its ground.”

I guess sometimes feeling like a nut isn’t so bad. Good thing. I’d still prefer some other way.

I saw this quote on The Joy of Autism today. It’s from Audre Lorde.

“When I dare to be powerful - to use my strength in the service of my vision, then it becomes less and less important whether I am afraid.”

I doubt she had parents of autistic children in mind at the time, but if she had the strength of conviction and determination to say these words given everything she faced, I have no excuses to make for myself.

When you’re the parent of an autistic child and your strength, determination, and conviction about doing however much work it takes to help your child realize their full potential starts taking over inside of you, you realize that this precious child in front of you is your vision.

Before her death, Audre Lorde took the name Gambda Adisa, meaning Warrior: She Who Makes Her Meaning Known.

If that doesn’t give you goosebumps when you think about your child, go back and read it again until it does.

We are a very kind and gentle family towards each other in general. We are polite towards each other – we drop “pleases” and “thank yous” around here like they are nothing. If we disagree, we try to discuss the issue rather than scream at each other (although sometimes the discussions can get heated!). Right now, we aren’t being as kind and gentle toward each other. We’re sniping and being sarcastic during the day, although at night when we lie in bed and talk, we are very sensitive to the other’s needs.

As I have mentioned, I read a lot. I’m re-reading old favorites – books that I know will comfort me. I know where the hard parts of the stories are, and I can easily skip to the good parts. How I wish that life could be like that sometimes. I’m sure everyone does.

Right now, I’m re-reading Betsy’s Wedding* and have gotten to the place where Betsy is writing her Rules for Married Life. “Always, always, be gentle and loving. No matter if you’re tired or feeling cross.” That’s something we have to remember right now.

It’s very easy to let ourselves take out our anger and frustration on each other, and I’ve decided I will not let that happen.

(*Betsy’s Wedding is the final book in the Betsy-Tacy series by Maud Hart Lovelace. They are books describing a girl growing up in an idealized early 1900s Minnesota. They are wonderful escapism if you like “happily ever after” types of books.)

This pretty much sums it up.

“I’d piss on a spark plug if I thought it’d do any good!” - General Beringer from the movie War Games.

While I’m trying not to act like the above title (10 points if you know where it’s from. 20 if you sing it!), it’s a little glum around the ol’ Flashlight house these days. We’re still trying to work our way through the stages of grief everyone talks about – and I’m stuck in the anger/despair part.

Really, why does this have to be so hard? I, like all parents, want my child to have an easier life than I have had. I want him to have the good things from my life: to grow up loving to learn, go to college because it’s just what we do, find a wonderful partner like I have, and have beautiful children that I can spoil someday. It reminds me of that line from Steel Magnolias where Julia Roberts’s character says, “I want to sit on the front porch, covered in grandchildren, and say ‘No,’ and ‘Stop that.’” I want him to skip the bad things…

Instead, his life will be immeasurably harder than mine. He will have to work harder at EVERYTHING than I had to. Everything (ok, except peeing while standing up, which I still can’t do unless in the shower… it’s OK, I’m the one who cleans the bathroom).

This changes our lives for the long term. It changes our plans for ourselves (second baby? Moving to the mountains someday?) and our plans for him (doctor? Lawyer? POTUS!?).

Interestingly enough, it doesn’t change our lives for the short term. J-man will still have the same therapies he had before, since he was already in developmental, occupational, and speech therapies. He will still attend the special preschool. He will still pull us to the back door to go out and swing every day. He will still continue to delight us with his smiles and giggles and sense of mischief. He will still be the wonderful boy we know. He will not know the difference that 3 letters can make.

We will though.