This week a fuschia envelope arrived in the mailbox, addressed exclusively to “W,” inviting her to sign up for a year’s worth of Teen Vogue and I thought W? Our W?
Teen Vogue you’ve got this girl all wrong. This girl is into dirt and butterflies and sap samples. She loves books and her microscope kit. I have to remind this girl to brush her hair every morning before she leaves our house or else she won’t do it. Her mind is nowhere near fashion, beauty, and celebrities. This girl doesn’t even have her own cell phone. She’s turning 11 this week.
But Teen Vogue’s calling card made me realize that things are changing. W starts middle school this week. MIDDLE SCHOOL. And this little girl I know now will have a whole new academic, emotional, social, and physical (shudder) dynamic to deal with.
And of course there’s the autism dynamic.
I’m nervous. This is new territory. J and autism–it’s all W’s ever known. Six weeks after she was born she was right there with J in early intervention preschool, speech, occupational therapy. First in her car seat, then propped up as a six month old sitting next to him on his carpet square, toddling down the halls of his early intervention school, later as a peer model in that same classroom.
Autism has affected every single one of us in this family. But I think it’s affected W the most. Steve and I have lived the majority of our lives without ever knowing a thing about autism. W has lived with it every single day of her life.
I ask her about it a lot. I ask her if she feels like she gets enough attention from us, because I know she doesn’t. She assures me that she’s fine–that hanging out with just me would be nice sometimes, but “I know that J needs more help than me.” I ask her if she gets embarrassed about J. “Sometimes,” she says. But she’s always the first one to come to his defense. Like if some stranger at the grocery store criticizes something J does. “People just need to get over the things he does,” she tells me. “People just need to know what autism is.”
I admire her. A lot. The way she bounces back so quickly if J ruins her crafts, licks the brownie batter bowl before she’s gotten a chance. She doesn’t stay mad very long if we have to leave a movie theatre, or some other fun activity early if J has a meltdown. Most of the time she has more patience with J than I do.
And now, I think their paths are going to diverge. She’s going to experience middle school fully in all its gore and glory in ways that J doesn’t always understand. W understands everything. She notices every little look, glance, sigh, social cue around. These next few years are going to be exciting and terrifying at the same time. We’re all going to be figuring this out together.
So Teen Vogue, give us a few years. This girl has a ton of stuff on her plate. Don’t make her grow up too fast. In fact, there are times where I wished she didn’t have to be so grown up. Let her still have fun with butterflies and nets and rock collections.
There’s plenty of time later in life for beauty and fashion.
Thursday we took the whole family to the dentist and it was hard. Really hard. But not necessarily in the way you might think.
J had the first appointment. We did this because we knew this was going to be hard. But we also knew that J had been a few times before, and we know that with J, the more times he does something, the better he’ll do. He’s been to a few cleanings before. He never makes it to the end, but usually the hygienist can get a little something done before he squirms to much or takes a full on anxiety attack.
Thursday went okay–at least us parents felt it went okay initially. In fact, before the dentist consult, I thought things were going pretty good. Not perfect, but not terrible. J handled the xrays like a pro–a huge improvement from the first few visits. He handled the large, awkward wing bite film cutting into his cheek. He handled the readjustments when it slipped. He held still when the pictures were taken. Both Steve and I were SO proud of him. Big steps here, people. I wanted to say to everyone, “look how awesome he’s doing!”
This is J post xray bite-wings, and “LOOK HOW AWESOME HE IS DOING!”
And then came the scaling, and to the hygienist’s credit, she really tried her best. She was really patient with him, but he was just too squirrely and unpredictable to get much done. At that point we all decided to give J a break and consult with the dentist. But the dentist took about 15-20 min to get to us and by then J was totally done. He was a hot sweaty, anxious mess. After a quick consult, we found out that J had two cavities, and that we were going to be referred to a dentist at the hospital–you know–fully put under to take care of the cavities AND the cleaning. And at that point I almost started bawling my face off in the office because I’m going to have to put my child under full anesthesia and that freaks the heck out of me.
I don’t know why. I’m writing this a few days later and I’m realizing it’s not the end of the world. I’ve been put under twice in my life for surgery. Steve’s been under twice too. Kids go under all the time for tubes in the ears. But I think I was a little more vulnerable that day for a few reasons.
Maybe because it was because we work on anxiety every day and a lot of times the anxiety monster wins. Today it won. I get that he might need some sort of sedation for the cavities. Maybe laughing gas? Does he really have to go all the way under? We have tried pulling teeth twice at this office–the first time went fine–J handled the needle, tolorated the numbing and the dentist got his tooth out without any big problems. The second time, J was so paranoid about the numbing (the needle wasn’t the big deal–it was when he started to freak out about his cheek falling asleep that was the big deal) and it was an all out wrestling match to get the tooth out. We were all a little shaken up about that.
So yes, I get that he’ll need to have sedation–possibly be put all the way under for the cavities.
But the cleaning? I know he’ll figure it out. Heck, he figured out the bite-wing x-rays and was an all star over that AT THIS VERY VISIT.I know if we get this boy in the chair enough times he will learn how to get through it. He always does. He held his own urine for 7.5 hrs when we were potty training because he was so resistant to everything potty training and then he did it. At 3 and a half. And he’s been potty trained ever since. We had an all out stand off back in March about piano practice 45 minutes of me sitting on the piano bench waiting for him to finally sit down and do it. He’s practiced M-F ever since. He isn’t always happy about it, but he’ll do it. Bike riding, numbers, gymnasiums. That’s just how this kid works. That’s how he gets through all anxiety. He just has to push through it.
I know it would be the same way with a cleaning. We could spend 5 min in the chair at a time with a scaling. Then go home, and then come back next week and bump it to 8, then 10, and then the whole time. It would be SO good for his health in the long run. He wouldn’t have to wait annually or even longer for the “full meal deal” fully sedated in the hospital. I KNOW HE COULD DO IT. I’ve known him for almost 13 years now. And as I start to try to articulate this cleaning plan to them I realize what a ridiculous request this is for them. This is totally, 100% not financially viable to do it this way. I know at the end of the day this is a job and the reason we all work is to make money. I know they don’t “do disabilities.” Their office doesn’t have any of the resources for that. Steve asked about laughing gas and they don’t even have that in the building. I know this is also a private practice and they can service whomever they want. I don’t blame them. It’s true that they’re not equipped to handle him. It’s true J is hard. If he weren’t my son and I didn’t know him well enough, I wouldn’t want to try helping him or feel confident in helping him either. If I didn’t know anything about autism, I wouldn’t know how to treat him either. And the more I step away from this experience, the more I see this dentist is right. They are just not a good fit for each other and the dentist is being very responsible in referring us somewhere else.
But what I really want, and I don’t know if this is even possible, but what J needs is someone who is willing to let us “scream it out” for the first couple of times, who is willing to fail the first couple of times. That’s the hard thing about dealing with the world outside of our home. Many times it’s not feasible to let him scream it out. It can be unnerving, annoying, and most people out there know absolutely nothing about autism. We all share this world and there are social norms and protocol to follow, because let’s be honest, none of us are the same, none of us see the world the same way, and we all have to somehow figure out how to work and live and be with each other. That’s why the norms and protocol are there. We all have individual rights we want protected and honored. Sometimes they knock heads with each other. And giving and taking is just being a part of the community.
At the end of the day, my requests might be unreasonable. With this dentist they definitely are. No fault on his part. My requests might not be okay for anyone and that’s okay too. Of course, being a mother, I am biased and sometimes that clouds my judgement and that might include my judgement on dental procedures. In the end, hospital admission is what we might have to do, and if that’s the right path in the end, then it will be the best decision to make.
I came home, still really upset. After talking with my sister she let me know that there are lots of dental options out there, even pediatric dentists with beds to strap down children while they’re on laughing gas–Hannibal Lecter straight-jacket style–all in the dentist office. She knows because she’s been in these offices and her son saw 4 different dentists until they found the right one for him. He doesn’t have autism, but he has anxiety going to the dentist. As she said, “plenty of people have bonafide fears of the dentist.”
So I press on in my quest for the right dental procedures for J. I’ll look into the sedation dentistry offices here in Fargo (which in retrospect, that is probably the first place I should have gone. I probably should have done a LOT more research going into this. I guess I thought over the years J and the current dentist would just grow into each other. Which is ridiculous, because they see each other a good 20 min at most a year). I’ll probably go into each office and talk to the dentists face to face and see what they think and feel about the issue. I’ll ask if they’ve every treated kids with autism before. I’ll ask them if they really feel like hospital admission is the best option for the cavities, if they feel like they would be up to trying cleanings with us, or if they think that is both too much for them and J to handle. At the end of the day it comes down to the right fit and procedures for J. Sometimes I forget that with health needs (including dentist) you have to really research and shop around–really shop around. The health care professional might be great for your friend’s family, but not for yours. You’re doctor might be great for you but not your husband. Every dentist or doctor has strengths and weaknesses (like us all) and it’s my job to see who is the best for J and his needs.
Signing off for now–until the next installment of the dental saga 🙂
For weeks I’ve been trying to figure out how to teach J to pay more attention when getting dressed. Too many mornings he’ll come down with his shirt inside out. Workout shorts on backwards. He always has one sock on the right way and one on upside down. Our camping trip to Banff and Jasper was really the last straw for me on this. He would dress in the tent only to come out looking like a mismatched hobo (to be fair we were wearing grungy camping clothes). It was such a pain to have him go back in the tent to “fix it.” Or worse, his left sock would be slipping off his foot because he put it on upside down and so we would have to pull his shoes of and fix it for him before the start of a hike. He honestly has no clue when he messes these things up. And he gets really embarrassed and frustrated when he as to “fix it.”
For days after our trip I couldn’t figure out the best way of going about this. Telling him his shirt was inside out didn’t do anything. Telling him his shirt was on backwards didn’t do anything. In fact, he seemed even more confused as to what to do. I’d show him a pair of underwear and say “Look, this is the front of the underwear” and he’d still come out with it on backwards. This clearly wasn’t a motor skills issue. He can button and zip and snap anything on his clothes (it’s not naturally easy; years of OT has helped with this). I started realizing that this was almost a proprioceptive issue–almost a deficit between his mind and body–or outside objects and their relation to his body. Front and back. Inside and out. Years ago he had the same problem with prepositions. He didn’t know what I meant by putting the book, “on, over, under” the table. He didn’t know where those words were in relation to him.
I decided to use his anchor chart for this. (Yes he has an anchor chart nailed onto his wall in his bedroom). And I decided to just tackle the “backwards” issues and leave the “inside out” issues for later. I also wanted as little words as possible. Verbal commands just seemed more confusing and frustrating for him. I also wanted to make sure he was more mindful in dressing. Too often he’s in such a rush to get dressed and get going he doesn’t check the mirror when he leaves the room. This is what I came up with:
I would never have thought in a million years that I would be spending late nights as a parent drawing skivvies on outlines of human bodies.
Forgive my lack of artistic ability. Even with a google searched and printed outline of a human body I can’t make this human look human. Ken doll hair. Spandex yoga pants. I chose to make a dotted line for a tag with the word “tag.” So many shirts now have no tags and just writing on the shirt where the tag is supposed to be–probably as a result of a lot of kids having sensory issues over tags 😉
Once again I was going for minimal words. I changed the directional words to “top” and “bottom.”
So far it’s great. J is really self-conscious about privacy right now (which is great–at this age he should be) so this lets him figure it out himself without me watching over him. It’s really funny. He’ll spend a good 8-10 minutes getting dressed now and I know he’s really trying to figure out the chart and how he translates that to himself.
Every morning now everything is on the right way! Sometimes we still get an inside out shirt, but the tags are in the back! When he gets this down more efficiency, then I’ll have to brainstorm a way for “inside out and right-side out.”
Maybe this will make school mornings a little less stressful and easier. But for now, let’s just live up what’s left of summer.
The Messy Art of Parenting Autism 