In Which She Won’t. Shut. Up.

I quit my job almost 4 months ago and I couldn’t begin to describe all of the positive changes that have been bestowed upon my life. Our life.

For most of the past 10 years I would arrive home at the end of the day already spent. I stopped cooking. I stopped reading, crafting, and gardening. I stopped talking. I stopped eating and sleeping. The only thing I did for myself was go to the gym. And that was only because it was there on site and free. Literally, it took everything I had to get up in the morning, make it through the day where I was ON all day long – answering questions, making critical decisions, meeting everyone else’s needs but my own – and get back home to my safe place.

And coming home and shutting down would have been okay if not for my husband and children. I was only half-present for the last years my children spent at home and for the past 2 years was mostly absent to the point that not only did my marriage almost not survive, there were times that I didn’t think I would physically survive it.

BUT NOW! Now the house is spotless. I’m cooking, reading, and crafting again. I’m eating and sleeping. I’m engaged with our left-at-home son, and when Tim walks in the door I Won’t. Shut. Up. Regardless of whether or not I’ve been snapping my entire day to him while he tries to work. I tell him about my workout, about lunch with the girls, about gardening, my sister, the cat, the podcast I listen to. I tell him about the laundry, my next blog post, the feelings I’m still processing about the asshole-micromanaging-dictator who was my last boss. I tell him about my hike in the woods, the crazy speedy lady at the gym, the itchy bump I have on my left ankle. And only when his eyes glaze over do I catch myself and remember to ask him about his day and if he needs a beer.

We’re down sixty-thousand dollars a year, which was our vacation and Buy Whatever We Want Money, but I think we’d both agree that the toxicity that that job brought to our lives wasn’t worth the extra money.

Finding the Right Motivation

The very scientific method Tim utilized to get Alex out of bed this morning:

“ALEX! GET UP! THERE ARE CHEERLEADERS RUNNING PAST OUR HOUSE!!!”

That boy was up and out of bed faster than the speed of light and stood at the picture window watching the girls run by with a big ol’ smile on his face, in sheer wonder at his good fortune.

*** Special thanks to the Purdue Women’s Track Team for their participation in Operation Alex this morning 🖤💛***

Thank you for joining us on this journey,
Tim and Paige 💙

Autism is Not Less, Just Different

There are A LOT of things that Alex can’t do, but there’s SO MUCH that he can do. And some of those things are really important.

He can’t talk, read, or write, but he can communicate well enough to get his needs met.

He can’t drive or ride a 2 wheel bike, but he can ride his 3 wheel bike.

He can’t complete his basic hygiene tasks – showering, shaving, brushing his teeth, wiping himself, choosing weather appropriate clothes, but he can dress himself with supervision.

He can’t get himself up in the morning, but he can put himself to bed.

He can’t cook or choose healthy, balanced meals, but he can feed himself.

He can’t change his sheets, but he can straighten his covers each morning if we don’t use a top sheet.

He can’t handle his own money or make change, but he can hand it to the cashier if we give him the appropriate amount.

He can’t cross the street or walk his dog, but he can feed his dog if we monitor him to ensure that she only gets 2 scoops.

He can’t hold a job, but he can carry out simple, helpful tasks with prompting.He can’t understand and carry out complex commands but he can follow simple, broken-down commands.

He can’t be told an answer once and expect it to stick but he will let things go when we tell him that’s enough.He can’t control his emotions at a movie or a show – if he is excited and enjoying himself, everyone in a 10-seat radius is going to know from his squealing and clapping and jumping up if we don’t catch him in time…. And really, this kind of pure joy is just amazing. Just enjoy it when it happens.

He can’t understand that death is permanent but he does remember those who pass on.He can’t decide to go get ice cream, but he can ask us to take him.

He can’t ask a girl on a date or a friend to spend the night but he can participate in community and Wabash Center events and plays with his mom’s other kids and with his niece and nephews.

Alex knows when someone is hurt or sad and has compassion in abundance for others.

He knows when it’s Friday and will remind us that it’s time to go see his mom.

He knows his way around town and will let us know if we take an unexpected turn.

He can navigate his iPad and Kindle and gets to places on the internet (usually planes, trains, or cheerleaders) that we couldn’t begin to trace.

There is a lot Alex can’t do, but there is SO MUCH that he can do and it’s up to us to ensure that we adapt his world to fit his abilities so that his quality of life is the best that anyone could expect. Alex’s life isn’t less, it’s just different.

Thank you for joining us on this journey, Tim and Paige 💙

Teamwork Makes the Dream Work

So. We’ve talked about how sweet and adorable and funny Alexander is. And he is absolutely all of those things. But it’s not all rainbows and unicorns all day, all the time around here. And about the time we think we have him all figured out he throws a curveball at us…probably to make sure we’re still paying attention.

About 9 months ago, Alex started coming home with rug burns on both of his elbows and the transporting staff at the time told us that he was sitting on a beanbag chair at day services and rubbing his elbows on the floor, causing the burns and subsequent scabbing. We didn’t worry too much about it because while Alex does have some stimming behaviors, he’s never self injured (save the infrequent and odd head slapping from which he is easily redirected). We kind of filed it under Natural Consequences and decided that if the burns really bothered him then he would stop doing it…. RIGHT? I mean, that’s what we would do…

Fast forward about 3 months. Not only was the self injury via elbow burns not going away, it was getting worse and Alex was becoming increasingly non-compliant during the day and crying more on top of that. AND it was only happening at day services. His behaviors at home had not changed in the least. And then one day last November, Tim got a call that Alex was rubbing his elbows, had bit his fingernail off, and was crying uncontrollably and they needed Tim to come pick him up. And for a kid who had never self injured during his entire 24 years, it became a Thing that we just couldn’t ignore any longer. So me, being the Mama Bear that I am, decided that he was being ignored at day services and that was going to STOP. RIGHT. NOW. I mean, I understand how it could happen – for a special needs kid, Alex doesn’t REALLY have that many needs during the day. All he really wants to do is wander around, interacting with others on his terms, when he wants, asking about his People and his Things, and play on his tablet. (Please refer back to my posts about our weirdly social kid with Autism and the other post, The One With All the Questions.) And Tim, being the one who reels me back in when I Decide A Thing and go full bore at it, very diplomatically set up a meeting with our Medicaid case manager, our Behaviorist, and the amazing staff at Wabash Center and together we came up with a plan for the day services staff to engage and redirect Alex from self harm. In order to prevent him from starting the self-injurious behaviors in the first place, the plan is to take Alex, one on one, out of the classroom to visit other staff in the center, take him along to recycle, and redirect him before he begins to self injure. They also opened up another room, allowing him to wander more during the day. And as soon as the staff began to implement this plan his self injuring behaviors stopped. I mean STOPPED. Immediately. That day. And we’ve never seen another self injuring behavior since.

Meanwhile, in December, I resigned my position as Supervisor with the Department of Child Services making me more present and engaged at home (please refer to my post about quitting my unreasonably traumatic job) and we credit those two events – the change in his routine at day services and me being more engaged with him at home – with drastically changing the dynamics of Alex’s day-to-day life. I’m with him in the morning when he leaves, and I’m almost always home when he returns at 3:45 each day and since I’ve been home he has had one major incident where he struck a staff member in the face while she was attempting to redirect him from leaning back in his chair, leaving a mark both on her face and on the wall. It’s not acceptable behavior, but in the world of the special needs, one incident since November isn’t bad and we’ll take it.

While life with Alex comes with some Things, Tim and I realize how very lucky we are to have THIS autistic kid. Life with him could be infinitely more difficult. We have friends with children who have substantially higher needs than Alex and we really are grateful for the kid we got. His humor and sweetness and concern for others far outweighs any issues he brings to the table.

Thank you for joining us on this journey, Tim and Paige 💙

We Just Meet Him Where He’s At

Alex’s life is something that none of us would ask for. We wouldn’t ask to be medicated in order to regulate our emotions and then medicated again in order to sleep. We wouldn’t ask to have such difficulty communicating that we sometimes get fiercely angry out of frustration. We wouldn’t ask to need assistance performing such simple tasks as brushing our teeth, dressing, and picking out well-balanced meals.

But if there’s any blessing here it’s that Alex doesn’t appear to understand what he’s missing in not developing into independence. And however Alex’s life is defined, despite ALL of his challenges, at the end of the day Alex is happy and this is all we ask for him.

Oh, don’t get me wrong. He can be a raging jerk when he doesn’t want to get up in the morning, yelling “no,” refusing to get up and go into the bathroom, and not cooperating with getting dressed. But really, wouldn’t most of us behave this way every morning if social norms allowed it??? He just doesn’t care about your social norms. But once he’s up and moving he’s practically perfect in every way. He is gentle and loving and funny and very little trouble.

He is so empathetic. If you have a bandaid somewhere or he knows you’re ill he is very concerned about it. I had bronchitis a few months ago and didn’t get out of bed before he left for school. The report that came home that day was that instead of signing for Dad all day long, he kept asking the staff where I was and signing that I was sick and in bed. He was very worried and came in to check on me the minute he walked in the door. Then recently, we’ve been working in the yard and not only do I have a blister on my thumb, I also have a pretty deep cut on my ankle from a garden tool and he keeps checking my wounds, signing “hurt” in his concern.

He is so affectionate. I used to go to work before he got out of bed but now that I’m home when he is transported to Wabash Center, he’s taken to telling me “bye, Ma” several times as he’s putting his shoes on and kissing me on the cheek each morning before he leaves. It’s actually the sweetest thing.

Yesterday he and I walked to the dentist office from our house and he is The. Slowest. Walker. that I’ve ever encountered. A snail would beat him in a foot race. So to speed him up and get there before the office closed and we missed our appointments I started to sing to him – “Following the Leader” from Peter Pan, and then “My Church,” a country song that’s been stuck in my head for 3 days. I’m not sure if it was the look of me dancing and belting out Disney tunes while walking up Northwestern Avenue or if it was that my singing is hilariously awful, but he kept laughing, saying “Awww, MA,” shoving at my shoulder, and trying to tickle me. (Actually on reread that sounds a lot like embarrassment. HA!) We had a great few minutes laughing together, and my trick worked. He walked faster (probably trying to get away from my singing) and we made it on time, giggling as Tim met us in the parking lot.

Whatever Alex’s existence is categorized as is irrelevant to him. He will never put a value on his life or feel that it was a life not worth living. He thrives nearly every day, happy and joyful and truly reveling in the simple things and relating to each of us as only he knows how.

Thank you for joining us on this journey, Tim and Paige 💙

The Worst Ending

Police: Woman admitted to killing special needs grandsons

Yesterday I spent an hour while my coffee got cold writing a related but altogether different post. Then I had Tim do a read though, which I always do in April before I post to ensure that he doesn’t have any edits or suggestions to temper my Blunt, and he told me about this story out of Tucson and now we want to talk about this. This is as important as it is tragic.

We want to be perfectly clear that we in no way are justifying this grandmother’s crimes. Our goal is to bring the level of desperation this woman must have experienced to your attention and to educate you about the lack of resources available to the parents of children with Autism.
I hope it comes as no surprise to any of you that this country is grossly inadequate at addressing the needs of the mentally ill. And actually, to be perfectly frank, we aren’t that great at addressing the needs of the physically ill either. What may surprise you is that an Autism diagnosis is the bastard diagnosis of both of these systems. It’s not considered a mental illness, so what inadequate mental health services this country does offer aren’t generally accessible to those with Autism, and it’s not really considered a physical illness so many of the services available to the physically ill also aren’t accessible to those with Autism. And it’s in this void between the two systems where Autism families live, sometimes only striving to get through today.

Autism affects every single child differently and to varying degrees. Obviously, I only know what you know about this family after reading the news article but having straddled the world between being a parent of an autistic child and working in the child welfare system for the past 12 years, I can make some assumptions based on this grandmother’s actions and my own experience.

Forget for a moment that she was caring for her two autistic 8 year old grandchildren, and consider for a moment that she lost her husband 5 years ago, then her daughter by suicide 2 years ago which prompted the guardianship of her grandsons, and then on top of that, their needs were so intense that she quit her job to care for them which not only means that she lost some amount of income, she also lost some measure of support and connection to the outside world in the loss of her coworkers. So now we have a grandmother who is grieving, alone, and financially burdened trying to meet the needs of these two boys with Autism. To say that she was overwhelmed doesn’t begin to scrape the surface of this woman’s reality. It’s easy to sit here and look back on this tragedy and ask why didn’t she reach out for help before making the decision to take their lives. In fact, the woman in the news story linked in the body of this article says that she was available to help. And aren’t there agencies who surely could have helped so she didn’t get to this point? Maybe. Maybe not.

Let me illustrate for you what that need for help may have looked like. And I want you to keep in mind while you’re reading this that these boys didn’t have the flu which would render any help unnecessary in 7 – 10 business days. This is help that’s necessary Every. Single. Day. 24/7/365.

Some children with Autism constantly maneuver to escape the safety of their own homes (called Elopement) creating the need for an awake and available caregiver at all times. Some children with Autism cannot communicate or processes their emotions and become frustrated and violent, damaging their schools and homes and injuring their caregivers. Some children with Autism have sleep disturbance and rarely sleep. I have listened while desperate parents cried to me asking me to take their children with Autism and put them in foster care or residential. Parents who can’t turn their backs on their autistic children for fear of them grabbing the keys to the car and running out to drive it. Parents with children who grab knives to attack their caregivers. Parents with children who smash their new game systems in a fit of rage. Parents with children who will only eat one food and starve rather than eating something else. Parents with children who can’t be taken to the grocery store for fear of them running. Parents with children who only sleep a few hours a day. Parents with children who left unattended could seriously injure or kill other children in the home.

Now take all of that (or even a bit of that) and multiply it by two.

So the offers from friends for help, while well-intentioned and I’m sure came from a place of compassion and love, aren’t always sustainable in the long term. People can’t (and shouldn’t) put their own lives on hold to keep watch while a caregiver sleeps or showers every single day. People don’t want to be injured helping someone to manage the unmanageable every single day. People don’t want to have the responsibility of not losing an eloper every single day. People don’t want to do your grocery shopping every single day. People don’t want to transport your other kids to school and extracurriculars every single day.

So now I hear you asking yourself, “Aren’t there agencies out there who can help?” The answer is maybe. But also maybe not. Depending on a family’s location, insurance, ability to self-pay…. actual diagnoses and behaviors…

Depending on these boys’ level of need, their insurance coverage, and the types of services available they may have been eligible through Medicaid for 24 hour, one on one care by an agency, staffed with high school graduates making $10 an hour. Or they may not have been eligible for any paid services at all. Assistance may have been available through self pay, assuming this unemployed grandmother could afford to pay for respite care. If their behaviors were dangerous enough, an agency would have had the right to refuse service for their staff’s safety. Their behaviors may have been so severe that they would have been eligible to be admitted to an inpatient program, assuming that Arizona has any inpatient facilities for that age child and that grandma’s insurance would cover it. Or maybe not. And all of this is accessible, maybe, depending on grandma’s ability to navigate the system and negotiate with Medicaid and social security…assuming that she could even get to the Medicaid and social security offices and stand in a 90 minute line while caring for these 2 boys.

So now what happens to her? Since she survived her suicide attempt she has been arrested and charged with 2 first degree murders. She will stand trial and likely die while still incarcerated. But this woman won’t be tried by a jury of her peers. Tim and I are her peers. The parents who have suffered bruises every day at the hands of their child with autism are her peers. The parents who have cried because their child got suspended from school but they still have to go to work or get fired are her peers. The parents who have had to pull their car over and defend themselves because their child had turned sideways in his seat and was kicking them while driving 50 miles an hour are her peers. The parents whose child only eats Wendy’s chicken nuggets are her peers. The parents who have been called from school for the 4th time this week to pick up their child who was having yet another meltdown are her peers. The parents who have nailed the windows shut and locked their child in their bedrooms for their own safety are her peers. The parents who have awaken to find feces smeared all over their child’s bedroom are her peers. Her jury will not be composed of Tim and Paiges.

We don’t condone what she did and we’re not justifying the fact that she murdered her own grandchildren but we are saying that we understand how this grandmother arrived at this point of overwhelming fear for the future and her desperation in caring for her grandsons alone and we’re saddened that for this Autism family this is how their story ends.

Thank you for joining us on this journey, Tim and Paige 💙

The One With All the Questions

There’s more to meeting Alex’s needs than ensuring he remains safe and fulfilled of all of his nutrition and hygiene requirements. Alex is one of the most social people with an Autism diagnosis that we’ve ever met. He loves to talk to people and doesn’t mind physical touch. Fun story: we once had a freshly graduated psychologist come in to assess his IQ and after she left, contacted us with the results and told us that she didn’t think he had Autism because he was so social. And then we pointed out to her all of his other Autism markers placing him solidly on the spectrum. #stayinyourlanebabycakes

Anywhoo! Alex has had some recent behavior struggles during his day program at Wabash Center. I spent almost an hour on the phone yesterday with his behaviorist, Sara, and during that hour came to the realization that we’re all really great at meeting Alex’s basic needs but it’s time for us to educate his caregivers on moving further up Maslow’s hierarchy of needs beyond food, shelter, clothing, safety. Tim and I need to do a better job of ensuring that those caring for Alex understand his connection and communication needs and how to meet them. One of those early diagnoses that doctors threw out years ago was Obsessive Compulsive Disorder (OCD), which we don’t really acknowledge because we think those symptoms are part and parcel of his autistic need for consistency and stability. But one of those OCD-y things that Alex does is ask for his people. ALL. DAY. LONG. (Which leads me to believe that it’s really a stimming behavior – we’ll talk about stimming another day.) For a non-verbal human, this one NEVER. STOPS. TALKING. He probably asks for his people 200 times in an average day. I don’t really think about it anymore, but when he is with me all day I spend the day mindlessly answering and re-answering his inquiries.

Let me back up for a minute and tell you what he does, then I’ll explain it. Alex obsessively asks about his people all throughout the day. For example. When he wakes up after Tim has left in the morning he wants to know where Tim went. Then he signs for his sister, Mackenzie. The minute he gets home from Wabash Center he starts signing school. He asks for his dog, Maude (even when she’s lying right next to him). Then his staff (“gunner” – dont ask – we don’t know why), his brother Joe. Fire trucks. His horse. Santa, Rudolph. Camp Riley. If he’s seen his niece and nephews lately he signs for them. He asks for Lizz, his old para. Steve, his old bus driver. Pinky and Bear – long deceased dogs, his mom, grandma, the cat, the Boilermaker Special, airplanes, his wave runner, his bicycle…. and each of these questions has a very specific answer and if you don’t answer correctly (or god forbid, at all), his grunts get louder and he gets increasingly agitated until you address him and meet this need for human connection.

So. During my conversation with Sara yesterday, it occurred to me that part of the challenges he is experiencing during his day program may just be that the staff doesn’t know what he’s talking about or what the correct answers are: Dad’s at work. Mackenzie is at school. The dog is right beside you. You’ll go back to “school” tomorrow, after you sleep. Staff went home. Santa’s at the North Pole with Rudolph. It’s not time for dinner yet. Joe is in Chicago. Your mom is at work. Lizz is at school. It’s too cold for camp. Steve is at the bus garage. Your horse is in the barn eating and sleeping. The Boilermaker Special is in the train garage. The wave runner is at the lake in Kentucky. The Thunderbirds are in Arizona. Your bicycle is in the shed in the back yard….wash, rinse, repeat, 1000 times a day.

So if you need me next week I’ll be editing our “All About Alex” cheat sheet to include these signs, verbalizations, and correct answers to add to his communication binder for those who care for the loquacious little stinker.

Thank you for joining us on this journey, Tim and Paige 💙

Bringing It Back Down a Notch

Copied from my Facebook page:

After days like yesterday, when we talked about Life a la Tim and Paige and you all get so supportive and affirming and leave us comments about how amazing we are and say things like we’re saints and angels and that there’s a special place in heaven for us I always feel like I have to loop back around and bring this story back down a notch. Thank you so so much for your affirmative comments – they make us feel so good and we love you for that – but we are not saints and we are not so amazing. We didn’t ask for this, we don’t think that god gave us this because we could handle it; we do it because we have no other choice. Seriously. We love Alex. But you won’t see us banging down the door of any special needs adoption agencies asking to take on more of this responsibility – those incredible humans are the real MVPs.
To be perfectly Real, we COULD do this all by ourselves. We could. If we had to. But then we’d be tired and stressed and likely miserable and have decreased quality of life. If all of our focus was on meeting Alex’s every need all of the time it would negatively affect our relationship and put our marriage at risk and we are NOT having that. So.

The truth of the matter is that like a mega celebrity, it takes a team of people to keep Alex alive and thriving and Tim and Paige married and sane.
We have services provided by Wabash Center- about two years ago I started leaving for work at 7am which put all of the morning caregiving burden on Tim so we modified our day services to have staff come in the morning to get Alex out of bed, feed him breakfast, shower and dress him, and transport him to Wabash Center for his day program. At the end of the day the staff from Wabash Center brought him home and stayed at our house with him until I got home from work and relieved them of their duties. Occasionally we decide we need a date night during the week so Wabash Center staff covers those night as well.

We utilize Alex’s biological mother Amy to share the burden. By the weekend we usually need a break so Alex still goes to his mom’s house in Indianapolis almost every Friday through Sunday afternoon.

When we vacation if his mom can’t take him then he goes to his maternal grandparents or his maternal Aunt Kelly and Uncle Johnny’s home (who are amazing and we literally couldn’t lead the life we lead without them).
Our amazing friends John and Julie are always willing to pick up our slack and spoil Alex with a milkshake while he’s in their care.

Mine and Tim’s parents are basically on call to help out.
I have friends who love Alex and are always willing to help us out if we need it (the fringe benefits of being a social worker with a multitude of Helper Friends at my fingertips).

If our adult children lived in town they would by default be on the short list to help out.

We have a rock star of a behaviorist, Sara Pycke, who we can call at any moment to help us through Alex’s sometimes wonky behaviors.

We have an amazing Medicaid case manager who helps us wade through all of the confusion that comes with Medicaid and the Waiver program.

We have ex-staff and people who knew Alex from school who come back around asking to see Alex and who are willing to help out.

We have an amazing pediatrician who is always available when we need her and who still sees him even though he’s a grown ass man now.
We have an amazing psychiatrist who has been with Alex since he was about 12-ish who has ridden this roller-coaster with us and LISTENS to us and that’s gold, right there.

We have a cool dentist who manages to check Alex’s dental health while he wiggles around in the chair and jabbers through the entire exam.
And even his hairdresser at Great Clips is patient and kind and god help us if she ever leaves.

We literally couldn’t lead the amazing life we lead if we didn’t have every single one of these people to help us navigate it. They are our heroes and if we don’t thank each of you enough, please know that you have all of our respect and gratitude.

Thank you for joining us on this journey, Tim and Paige 💙

In Which We Continue to Plug Away

We KNOW that he’s developmentally delayed. We KNOW that he has Autism. But we have defaulted to autopilot and we just mosey on with our days showering him, brushing his teeth, picking out his clothes, ensuring that his meals are balanced, his meds are managed, and that he’s safely cared for by a responsible adult during every moment of the day.

Life with Alex has become just Life. It is what it is and we do it without thinking about it too much.

But then sometimes, every once in a blue moon, we walk into his room and see this. We see a 24 year old toddler holding his stuffed fireman while he sleeps and it hits us anew that this is it. We’ll never send him off to college or move him into his first apartment, have to talk to him about safe sex or meet his future spouse. And during these moments our breath catches and we remember that he’ll be dependent upon us forever and the responsibility feels heavy. No one asked for this. No one ever asks for This. But it is what it is and we snap a picture of the Cute, we smile at each other, and laugh at the life we lead. Then we go to bed and rest up for the same thing tomorrow.

Thank you for joining us on this journey, Tim and Paige 💙

Current Prevalence of Autism – CDC Stats

Grab another drink because I’m about to drop some knowledge on you and give you some reading homework in the link below. 😬

I knew when I started using the hashtag #our1in68 that it had an expiration date. I just didn’t know how long we had and as it turned out that it was only a few years. The most recent CDC data suggest that the current prevalence of Autism in the United States is 1 in every 59. Some studies suggest it’s as many as 1 in 40 but that may be from a difference in reporting criteria so we’re just going to stick with the CDC numbers (also because CDC).

At the end of the day the numbers don’t impact our daily lives, the way we deal with Alex’s Autism, or how Alex feels about it so for now we’ll just add a new hashtag and keep on keeping on.

Current CDC Prevalence Report

Thank you for joining us on this journey, Tim and Paige 💙