Carry on Wayward Son

Sometimes special needs parenting hits you in the face, hard. I took both kids to my 3-year-old daughter’s well check today. It was a little stressful when Caleb went for the stickers laying an inch away from the uncapped syringes, but otherwise an excellent outing with both kids. This is a rare feat in our household as we almost never take both kids into a place with one adult. I thought, “I got this” and took the kids to a nearby Chik-Fil-A as a treat for them doing so well at the Doc’s.

I was cocky.

We were 8 minutes too early for lunch. Caleb started crying. The obviously childless teenager politely asked, “Are you sure you can’t wait 8 minutes?” I point to my now screaming autistic 5 year-old while letting the cashier know that I have no problem waiting but my son clearly cannot. As we’re walking away, the manager calls out that they can make nuggets if we don’t mind eating hash browns instead of fries. I thought that at least Caleb could get his nuggets and the worst would be over, so I took them up on it.

I chose poorly.

While I was trying to order his kid’s meal, Caleb erupted into a meltdown that will surely go down into the record books. There was screaming, crying, and flailing. I felt the eyes of every person in that place burning into the back of my neck as I tried to console him while finishing the order. It was so bad that the manager came running around the counter and dropped down next to my daughter to try entertain her and allow me to focus on Caleb.

At that point I felt we were in too deep to leave, somehow managed to pull out and swipe my card, and then the manager grabs the food tray and asks where we are sitting. I pull/drag/carry my screaming Caleb to the furthest booth in the very back of the restaurant, open his nuggets, and hand them to him. Like a light switch, Caleb bursts out in a grin and sits contentedly eating nuggets while looking around smiling. Manager looks around to see if she’s on Candid Camera. I explain that leaving was trigger that set him off because he can’t handle when a set routine is broken. It’s especially brutal if it involves his favorite foods. He gets this from his mother. Also, a major shout-out to that manager who really stepped up and went above and beyond.

As we are leaving, all the employees smiled at me and told me they were sorry. I feel like this should be reversed, but whatever we’re almost done. Five feet from the door, my until-then perfectly behaved daughter notices the ball pit and starts screaming/crying because her mother always takes her. Mother strikes again and she’s not even with us. We’re moving and the door is in sight, so it’s just a little salt in the wound. I get the kids into the car and book it home.

On the drive back, Carry on Wayward Son by Kansas came on the radio. It was rather fitting and made me reflect… minus the whole lay your weary head to rest part. Caleb has his own road to travel through life. It’s not well-beaten and it’s going to be difficult, but it’s his road to travel. I already know that at times I’m not going to understand it, but that’s okay as long as I can be there to help him down it.

So carry on my wayward Son, don’t you cry no more.

Brian Samsell

The Tough Stuff

My husband and I rarely travel anywhere at the same time without our children. Especially overnight for multiple nights. As a matter of fact I think it only happened one time 3 years ago and that’s because I needed Neurosurgery. As I recall though, I think I was forcing my husband to stay behind even then because Caleb was 18 months old and Ari was 6 weeks and I thought I would feel better knowing they were with daddy and didn’t change my mind until a few days before. It’s not something I’m comfortable with so I just don’t make a habit of it.

What happens when you’re a parent and you and your spouse leave your children at the same time is that you have to make a formal and legally binding contingency plan for the worst case scenario. We updated that document the week we left town and it creates a pit in my stomach everytime I review the fact that in the most awful of scenarios, they would need legal guardians.

In all honesty, I don’t worry about Ari. She has a mixed language delay but ultimately, when she’s landed where she’s going to land, she’s going to be ok in the world. I live, however, in a constant state of worry about Caleb. It’s not because he doesn’t have an excellent prognosis or that he isn’t making incredible gains. The road is long. The days feel even longer. I know what he needs and how to fulfill those needs because before I ever knew I’d end up being Caleb’s mom, I happened to pick a college major and get a couple of degrees and a decade’s worth of experience doing the exact thing he ended up needing in the world. But what happens if I’m gone?

I can’t say it out loud. I cry when I type it but physically I can’t say the words out loud. Because do you know what can’t happen? He can’t live in a home. He can’t not have his voice heard. He can’t have his stims suppressed. He needs to be around typical peers and screech and talk and flap and hold things 2 centimeters from his eyes and he needs to be with people who understand those things are the same as eating and breathing for a kid with Autism. I don’t come from a family of pediatric speech and occupational therapists. So that means I make a lot of contingency plans and “just in case” documents and hope that if nothing else, being under the care of people who love and “get” him will ultimately be what carries him farther in life than anything else.

I don’t know what happens to Caleb in a world where I’m not his person. I do know, though, that if it isn’t me, there’s a whole tribe of people who will love and advocate and speak up for him on my behalf. And that’s never anything to be sad about.

Love and Autism,

Erin

We’re here, we’re here!

“Take That, Autism where did you go?!”

We’re here. We never left. In the waxing and waning of parenthood where “I’ve got this” quickly turns to “What day is it?” in the amount of time it takes a Lego to lodge in your big toe, we lost track of some things around here.

We overbooked, over expected, drowned a little, came back up for air, and are trying to find our footing again. That will involve some re-organizing, consistent planning, saying “no” more, and continued consumption of caffeine.

One thing that never stopped here was Autism. Just because I wasn’t writing doesn’t mean I wasn’t feeling. I may not have been shouting about Autism from the rooftops but I at least was talking about it in a moderate volume on my back patio.

Caleb turned 5 a couple of weeks ago. That’s a whole hand, ya’ll. We had a super fun and the biggest party we’ve ever hosted here on the farm for him. There were other kids here for a party for the first time. It was space themed (because this kid is not your typical train loving boy with Autism but does love a rocketship!) and I absolutely- in more ways than one- rocked his world. “Oh hey man, here’s almost a dozen kids who are gonna come play with all your things in your personal space and we’re gonna be cool with that, ok?” And he most certainly was 🙂 He wasn’t the most outwardly social and didn’t seek any kids out but when they would come find him and swim by him in the pool he had the biggest smile on his face I’ve ever seen. And you guys- he exhibited some 100% compliant cooperative play with a friend with not just a preferred toy but an item of Autism compulsion- his Lego sets. There were no tantrums, no meltdowns, and not very much sensory seeking. But there were laughs and smiles and words. Lots of words. I got reports of how much he’s grown developmentally (and physically cause you know- 98th percentile for height) from family members who only see him a few times a year. Caleb convinced a party goer who didn’t plan on swimming to go change into a bathing suit by making sweet eye contact and verbally requesting that they “swim” with him. And I’m 100% certain he knew everything and everyone about that day was for him.

It was an amazing day and I’m excited because I think 5-6 is going to be huge for him. I wouldn’t be honest, however, if I didn’t also include that there are bittersweet aspects to our special needs children growing older. While I make a big deal out of his birthday annually because I’m so incredibly proud of his progress year to year, the older he gets, the wider the gap becomes of things he can’t do yet. He’s talking a lot but still largely nonverbal. He likes other kids but doesn’t seek them out. He plays with all the toys he got as presents but still lines them up in rows. I bought a pack of size 6 diapers today. That stung. He’s doing better but he’s not 100% there yet with potty training. At 5 you can’t hide that there’s something different about him when we go out. Which I don’t try to do and I do have a genuine “screw ‘em” philosophy to any wry glances or judgmental stares received when we’re out. I do fear, however, that because his differences are more noticeable, that there’s gonna be that one fool who says the wrong thing just audible enough for me to hear and what in turn my reaction will be. You can ask me questions- blunt ones- I don’t mind. But you can’t criticize him or even elude to criticism with him in my presence because I have a hypersensitivity to protect him like you wouldn’t even imagine and I CAN’T handle it. I admit 100% the severity of my responses have not always matched things that have happened and you may say “oh, that’s a mom thing.” It is. But when it’s about your child with special needs it’s more of a “mom on steroids after 37 Red Bulls and an all nighter at an accidental rave” thing. The poking of the Mama Bear of a special needs child is a whole other post (stay tuned!).

So, I’m excited for Caleb’s 5th year. Also obviously, I’m slightly worried I may have to punch somebody in the face before he reaches 6 but we’re all a work in progress, are we not? 😉

Fellow Autism mamas- may your child’s birthdays ALWAYS be more sweet than bitter. 

Love and Autism,

Erin

PS, for fun, and so I can do the same things my Facebook friends post on an annual basis, here’s one of those fun birthday questionnaires about Caleb. He’s not able to answer the questions himself this year, but I’m confident this is what he would say if he could!

Caleb, Age 5

Favorite Toy: Legos

Favorite Outfit: Astronaut t-shirt and Mickey Mouse pj pants

Favorite TV Show: YouTube Surprise Eggs (ya’ll know what I’m talking ‘bout)

Favorite Movie: Lego Batman

Favorite Food: Mac and Cheese

Favorite Song: Rain, rain go away

Favorite Book: PJ Masks Look and Find

Favorite Holiday: Halloween

What do you want to be when you grow up? Astronaut. Or YouTube millionaire surprise eggs opener 😉