Peaks and Valleys

Isn’t there supposed to be a journey between the two? To get from a peak to a valley, aren’t you supposed to have to trek down the mountain? To see what’s coming, to feel the temperature drop and see the light fade? Likewise, to get from a valley to a peak, shouldn’t you feel the entrapping desperation diminish little by little as you make your way to the top? Shouldn’t you feel the warmth seeping back into your cold-deadened hands and feet? Right now, I yearn for transitions. I yearn to see or at least sense what’s coming. Instead, I’m being randomly teleported from peak to valley, peak to valley. Sometimes I don’t even know which it is. It’s some mad physicist’s idea of a joke…this dizzying, disorienting ride taking me from one extreme reality to the next. Probably a physicist with autism, since he obviously has no empathy for my emotional discomfort. Could God be autistic?

These valleys I speak of, they’re not the worst we’ve experienced. Looking back a year, two years…it’s been much, much darker. Much colder. But valleys are valleys. Death’s shadow lives in a valley. But Death himself doesn’t dare dwell there, lest our suffering be ended too soon. No numbing bliss for these valley dwellers.

Let’s start with a peakvalley…the most confusing place of all. The place where you can’t tell if it’s a peak or a valley because you’re suspended upside down and there are mirrors all around you. The mad physicist’s cackle breaks the silence. Javan’s been asking for several days now to see his Gigi and Grandpa as well as his Aunt Sue and cousin Rebecca. So, Friday I had to take the car in to get tons of obscure services done to it, bless it’s 200,000 mile heart. I figured they’d take forever. They usually do. But at least they’re dependable. So, I decided to see what good ol’ Gigi and Grandpa were up to and would they enjoy the company of a certain five year old someone? As always, if possible, they say yes. And it’s usually possible. What a sigh of relief to have such dedicated family members who know very well what they could be getting themselves into, have in fact experienced it several times, and still offer their support. To other moms of kids with challenges, know that this gift of family support and willingness to physically help out is the number one key to survival. It’s the one thing that I can honestly say I don’t know if I would survive without.

I spend my almost two hours at the car service place reading through Eustacia Cutler’s book, “A Thorn in My Pocket: Temple Grandin’s Mother Tells the Family Story.” I just had to know more about this mother who brought her daughter through such a cruel time for people with autism and made her one of the biggest successes of the autism community today. I’m 83% finished with it according to my Kindle app. There are some dreary parts about the book, long boring parts about the mother’s life outside of raising her children, but then there are some amazing insights that just slap you right in the face with truth and “Aha’s!” And then I think to myself, “How dare you deem these parts of the book ‘boring?’ These parts that are solely about the mother’s life outside of her family? Her life as a living, breathing individual?” And I realize that it’s because I don’t care about my life outside of being Javan’s mom. Not right now. Then I worry that I should. And then I realize that Temple’s mother didn’t care about her sense of identity either at this stage in the game. When Temple was very young, before she was in a semi-stable environment busy with school, camps, and neighborhood friendships that she could navigate on her own, Eustacia Cutler didn’t exist as anything other than Temple’s mom. Even she couldn’t do both. And then comes the “Aha” for me. I will get to be something other than Javan’s mom someday. There will come a time when Javan can be in school or camp or playing with the neighbor kids without me. There will be room for me again. But until that day comes, I don’t miss it. I don’t have time or energy to miss it. Still, it is a relief to know that it will come.

The car is finally done with it’s intense line of services. I head back to the grandparent’s to pick up Javan. He seems to be doing very well and had no problems being dropped off, so I venture to ask, “Were you on your best behavior?” “No.” Gotta give it to the kid. He’s fearlessly honest at times. Turns out, he hit them and threw things at them. I’m so devastated and embarrassed! These are his great grandparents we’re talking about here! Stronger and more fit than they’ve any right to be, but old nonetheless! (Sorry, Gigi and Grandpa, them’s the facts.) I know he hasn’t physically injured them, but I also expect him to be respectful of old people and I feel that this is a total smearing of poo on my reputation as a mother because in their day, he’d have been taken out behind the shed. I know also that that is complete nonsense and they don’t judge me, but feelings don’t play by the rules. I’m in the middle of a scolding and in total “teach you a lesson” mode when Grandpa stops me by informing me that he was wonderful 90% of the time. It was a short-lived temper tantrum and then it was over. Ok, well that does make me feel somewhat better. I had envisioned him being in an explosively abusive rage for the past couple of hours. Not so. They forgive him and love him and are always ready with more chances to give him. They will never deem him unacceptable. That is the legacy they will leave for him. You are always good enough. You are lovable.

Then Saturday, we decide it’s time to get out of the house and spend some time with Aunt Sue and Rebecca, who are luckily free to go to the park with us. More family members who love and support us no matter what we put them through. More people who validate us and keep us from shrinking away into nothingnesses of unacceptability. It’s a small park, a very well-defined area that screams, “This is where you play!” None of this spread out equipment, where do you wanna go first business. Rebecca, Javan’s eight-year-old cousin heads straight for the “This is where you play” area. Javan B-lines it for the empty basketball court waaaaaay over to the side. That’s alright. It’s enclosed. He needs time to process this new place, who’s in it, what he plans to do, etc. There’s only one baby girl on the playground plus Javan and Rebecca. He does great. He runs off to his own areas a lot, leaving Rebecca without a playmate, but she’s pretty independent and doesn’t mind. The fact that she’s mature enough to love him and want to be with him after some of the things he’s put her through is astounding in and of itself. He does play with her intermittently, and after the baby girl leaves he stays around quite a bit. They climb up slides together and share fruit snacks. Lots of good interaction.

Then someone else gets to the park that has now become “our park” because we were here first! A mom with two baby boys, one about 2 and one barely walking. Javan B-lines for them. I jump up to intervene, knowing he will react territorially. Aunt Sue says she saw a red ball roll down the hill and thinks Javan is going to retrieve it for them. Sure enough, he is! Whew! He gives them back their ball, runs back to the play area, and everything is fine. Until they come over to the play area and think they have some right to it. Just who do they think they are anyway? The mom is helping her 2 year old climb the ladder to the main area of the playground. Javan sits at the top of the ladder, spread-eagle, blocking his way. He’s not even intimidated by the mom being right there. Luckily, she just holds her ground with a matter-of-fact stare and waits. I intervene. I count him to three, pull him off the play area, and put him on the bench for time out. He doesn’t resist, but does express his anger that the boys are there. I can’t talk sense into him that it is not our park, we didn’t buy it, it isn’t in our yard. I can see it isn’t going to set in. He really does think that his rules, his thoughts, his ways are always right. No matter what. So we decide to call it a day. More peaks than valleys at least. And I got grown up time with a woman I love. Food for the soul.

We don’t go to church Sunday because Javan’s Daddy has been sick with a cold and we don’t want to run the risk of spreading it. What we do is finally get rid of some of the clutter in our house by loading up two – TWO – loads of “stuff” in the car and dropping it off at our favorite thrift store. Javan does so great with this it’s unbelievable! I don’t dare touch his toys. That would be a bad move. But still, “stuff” is very hard for him to let go. On the first trip, one of the things we unloaded that I knew would cause trouble is the stroller. We got rid of so much baby stuff it’s ridiculous. We’ve stored it for five freakin’ years! Anyways, the stroller is different because he still loves riding in it. His knees are kind of jammed into the little tray in front, but he fits. He asks me all the time to take him for a ride around the block in it, and I do. I think the rolling and jostling on our road is soothing to him and it probably also makes him feel safe and nurtured. But when I went to deliver a load of baby stuff to a friend of mine who will deliver a baby boy soon (yay!), that was one of the things I offered. Turns out, she didn’t need it. But I realized that I had no problem giving it to her, why not just get rid of it? Javan did have a “Not my stroller!” moment when we dropped it off, but we just told him it was time, and he accepted it pretty readily with a little “Awww, man.” I was surprised that I felt a little teary-eyed as we pulled away from the stroller with it’s infant car seat. That’s what we brought him home in. I wish I weren’t so sentimental. At least not about things. It was so hard to say goodbye to that infant car seat that I hadn’t looked at or thought about for years. Maybe I could use a little more autism logic. One day they’ll probably realize that autism is a disease of logic and sentimentality is a disease of emotion. They’re both imbalances. Why is one so much more readily acceptable?

We decide to have lunch at McDonald’s to reward Javan for entertaining himself while we emptied closets and stacked boxes in the car, and for not throwing a fit about giving our things away. Before we go in, he admits that he’s really not sure if he can be nice to the other kids or not. We always talk about how to behave with the other kids before we exit the car. Well, we tell him that means that he’s going to have to try extra hard to talk himself through his anger or nervousness on the playground. It’s good to know you’re going into it with some uncertainty, then you know how to better prepare yourself. He is wearing his Wolverine costume, and another boy immediately takes to him because of it. Javan likes the boy, too, and they soon become fast friends, as proved by Javan’s formal “Friends?” handshake. Javan has always loved those two way phone communicator thingamajigs on playgrounds. You know, the ones with the big red megaphones you talk into and then someone on the other side of the park can hear you and respond? But he’s never spoken to another child on one. Only the most familiar adults have played these with him. On this particular McDonald’s playground, you cannot see the person you’re talking to. Very insecure-making for my little guy. But he and Cameron, this magical seven-year-old boy with silver teeth, talk on them endlessly. Javan thinks it’s hilarious to say, “Hello? Hello? Hello?” over and over. He hears Cameron saying, “Say something else!” And he hears Cameron laugh when he keeps saying, “Hello? Hello?” It’s their own little game.  This is a milestone, folks.

Then Javan goes up into the slides and tunnels, and I comment to my husband that this is the time when other parents relax – when their kiddos go away into kidland. This is where we un-relax. This is when we really wish that playgrounds were built of all clear plastic. We tune our hearing to his voice, his individual shuffle, his giggles or growls. Our ears are our only indicators as to when we intervene. All goes well for several minutes, then the first low growl emerges. “Javan. Come down right now.”

“Stupid!” we hear shouted from the top of the slide, and then he pops out of the slide and steams over to us. “What happened?” I’m not sure he tells us much. Cameron shoots out of the slide behind him and tells the story. Apparently, there’s a “big boy” up there that was punching Javan (couldn’t have been real punches, he wasn’t hurt at all) and telling Javan he was going to hit him if he didn’t go down the slide. Maybe Javan was blocking it? I’m not sure. Cameron says Javan didn’t do anything to make the big boy mad. Javan tells me that the big boy was making some kind of sound or something to his new friend Cameron, and he was defending him somehow but not by hitting. The story gets a bit blurry here. No parent emerges from the surrounding tables to call the big boy down for further questioning, so we tell Cameron bye and head out. We try to explain to Javan that that boy was being a bully to his friend. And that next time, instead of trying to handle a big boy bully on his own, he should come tell an adult and let them handle it. That probably won’t sink in for several years, if ever, but I know plenty of “normal” boys (and men) who can’t resist the temptation of “taking care of” a bully on the spot. Amazingly, this may be the first time we as parents have been on “the other end” of the hitting/bullying scenario. It’s really not as infuriating as I thought. Kids are kids. Now I know that other parents probably get that too when it’s my son doing the meanies. I count this play date as a peak.

We head back to the thrift store to scavenge for small toys. Also part of the reward for such an awesome day of shedding extra stuff. Getting more (but small) stuff. We love doing that because we can find 20 cent toys that go along with a set he already has. Today we found Po from Kung Fu Panda – he was the only one from that set we were missing. And we found a little four wheeler that goes with some Diego figurines he has. He gets to use some of his piggy bank allowance, we only accumulate small items, and we complete sets. Good deal. While we were at the thrift store, I am transported to a small valley without warning. Again, no trek down the mountain, no feeling drop in altitude or temperature, just here one moment there the next. Bam. This lady has a shopping cart with several odds and ends in it. One of the items is a lifelike baby doll. She has placed it in the baby part of the cart where all kids sit. Javan looks at it curiously and asks her if it’s a real baby. She says, “Does it look like a real baby?”

“Yes.”

“But it’s not wearing any clothes.” (Insert Mom thought process: That’s illogical. A real baby does not cease to be a real baby when naked.)

I say, “Look at its face. Does it look real?”

“Yes.”

“Ok, look at its eyes. See how they’re not blinking? See how the baby’s not moving or making sounds? That’s how you know it’s not real.”

The lady looks at me, looks at Javan, and says blandly, “It’s also made of plastic.” Obviously, she thinks we’re both idiots. I don’t really care what she thinks, not really at all. But still it rubs me the wrong way. Not anger, well maybe anger, but maybe more like annoyance. Like a Brillo pad to the nerves. Left me sort of scratchy.

Javan has also expressed remorse that we have abandoned the story reading part of our night time routine lately. Shame, shame I know. Ok, so tonight we make a purposeful effort to reinstate it. One story from Mom, one from Dad. He happily brushes his teeth (something he HATES doing) because he is so excited about stories! Stories are over, time for bed. “Okay! I’ll go pick out the ‘in bed’ books!” We read the books in the living room and then put him in bed because he has a loft bed and it won’t support our parental weight. We explain to him that we each read him the expected story and there will be no more stories. He pitches a fit like you’ve never seen. Screaming, crying, whaling. Ugly.

We can do nothing to calm him. Can get him on the bed, but not laying down. We decide to leave the room until the screaming stops. Instead, we leave the room until the throwing up begins. I hate this cycle. Every time he gets this upset and can’t calm down, he pukes. He has the good sense to throw up over the rail of the bed. Unfortunately, his bedtime snack had been strawberry oatmeal. Red gunk on carpet. Ew. Well, that distracted him enough to calm him down. He blows his nose and lays down so he can “get burritoed.” That’s Texan big kid speak for ‘swaddled.’ Peakvalleypeakvalleypeakvalley. And now, with a tired sigh, I resign for the night. Oh, shoot, I gotta wash my hair. Why am I always to exhausted to wash my hair! Ok, fellow special needs moms, that was an admission of embarrassing guilt for YOU. Now you know, you’re not the only one.

Heeeeeere comes the school week!

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