I Can't Believe I Hit Send: A Letter to the the Lieutenant Governor

We would like to personally thank you for your support of the Autism Insurance Reform (Senate Bills 414, 415, and 981). The Michigan ASD community has been enhanced by your hard work. Even today, we read about your work to build awareness by naming the Grand Traverse Lighthouse as Michigan’s first autism-friendly destination.

Your demonstrated commitment to improving quality of life for ASD families is why we are looking to you today to assist us—ASD parent to ASD parent—in navigating the existing Community Mental Health System. While we have tried to meet the challenges of raising a child with autism head-on, we are floundering in a system that seems designed to promote reactivity. Our family is in desperate need of a viable long-term solution.

When I (Jamie) started drafting this letter, I was sitting in a room with my sleeping first-born son. He was lying on a mattress on the floor, flanked by gym mats in Room 6 of the Sparrow Hospital Pediatric ICU because his bed had been removed for safety. I had seen him kick a hole in the hospital room wall, damage a monitor, lose access to metal silverware, and staff recoil from him.

He had spent several days medicated to the point that he could barely stand without assistance, and my heart was breaking. For 12 days and 11 nights he languished in that room, awaiting a transfer that most members of his treatment team didn’t really think would come. The entire time we questioned where the dignity was for him.

On May 27, 2003, Braden was identified as Autistic Impaired under Michigan Special Education Rule 340.1715. In the nine years since that day, we’ve followed a journey that has included biomedical, medical, and therapeutic intervention. We have a long history in seeking out the best options available to him. Our goal remains unchanged.

Perhaps even more challenging than rearing a child with ASD, or any special need, is raising that child’s sibling(s). Though it is difficult to receive less attention or to feel like your needs are less important, it is well documented that siblings usually turn out to be very kind and compassionate people. Our 8-year old son, Garret, is not an exception. He is a very bright boy who, until a recent relocation, attended a Gifted and Talented Magnet program.

We are blessed beyond measure to have these two very different, very special boys. But it is these boys who have brought us to a frightening crossroads. At almost 12, Braden is 5’3” and 121 pounds. At 8, Garret is 4’4” and 61 pounds. Braden’s autism causes frequent outbursts and aggressive behavior that has become unmanageable. Our previous requests for help have largely centered on trying to keep Braden safe; we are now facing the very serious reality that we cannot keep either son safe.

911 calls, hospitalizations, and placements document the public safety risk Braden has become as he’s grown. School data and emergency intervention plans support that conclusion. What isn’t documented as well is the private risk that he has become within our four walls.

Braden now sits in Henry Ford Health Systems’ Kingswood Hospital, where a psychiatrist is starting a trial of Lithium. In both hospitals, he has had a 1:1 staff person around the clock. The social worker there is discussing discharge and planning for his return to our family home. CMH has assured us that 24-hour staffing in our home is not an option, nor is outside placement. While we wholeheartedly agree that the ideal situation for a child is to remain in their family home, Braden has repeatedly shown us that is not the ideal situation for him.

As you well know, Autism Spectrum Disorder is based on a need for routine, for consistency, for predictability. The crisis intervention model promotes disruption of routine. In the 3 years that we have been stuck in the cycle, there has not been continuity of care for Braden. We’ve attached a more detailed history of our journey here.

We have often asked ourselves, “What could we have done differently?” Today, we ask, “What can we do differently?” We are being asked to recommit to a cycle that throws our family into chaos. A 911 call triggers an ER visit, which cues psychiatric placement in whichever facility can accommodate Braden for a period of time until “stability” is reached. Braden is then discharged and returned home as if none of these things have happened and all the while each member of the family is struggling to cope with what has happened.

We strongly feel business as usual is not the appropriate course here because it brings no resolution. As long as Braden remains in our family home, we remain unsafe. The security we try as parents to provide remains out of reach. Our children remain in danger.

All other less restrictive alternatives to placement outside the home have been exhausted. This social service agency, the Michigan Department of Community Health, more specifically Community Mental Health Services, must follow through and provide our family with the quality of life it was designed to ensure. If ever there was a case for MDCH to fulfill its mission to “protect, preserve, and promote the health and safety of the people of Michigan with particular attention to providing for the needs of vulnerable and under-served populations,” it is this one. Four Michiganders wait for a lifeline.

Braden’s dignity must be maintained and his strengths must be honored. Garret’s safety and success must not hinge on the instability of his brother’s condition. Jamie must be safe from physical harm and psychological distress. Alan must be honored as man who works to support his family.  We are not a family looking to abuse the system, simply a family looking to utilize the system. We believe it is in place and tax-supported to intervene in situations like ours.

We are writing to you to share our experience in raising a child on the Autism Spectrum in Michigan. We hope that this is not the typical experience for members of our community, but we fear that it is. We understand that there are no simple fixes and that nothing can change the path we’ve traveled, but we believe that sharing our experience can affect change for the families who come behind us. We also believe, with your assistance, we can change the future for the four of us.

Sincerely,
Alan and Jamie Lewis

Fighting

I've never been in a fight. It may be because I'm a lover. It may be because I'm a coward. I love a good debate, but I do not like confrontation. At all.

In high school, a group of girls wanted to beat me up. To this day, I don't know why. Instead of hanging around to find out, I went to the office and called home. I stayed there until my overprotective stay-at-home mom could get there to rescue me.

As close as I ever got was during my late teens. One night I kicked a sorority girl out of my apartment for being too sociable with my boyfriend. I read her the riot act, but I'll bet if I thought there would be a fight I'd have let it go. Later that year, I jumped on that boyfriend's back in a bar parking lot and hit him in the arms and shoulders until a bouncer strongly suggested I stop. For as much as a jerk as he was that night, he did decline when the bouncer offered to call the police.

That's really as close as I've ever come to fighting. It really isn't in my nature, apart from a few malt liquor-induced tirades and tantrums. That boyfriend fathered my children and is my favorite partner in (non-violent) crime, by the way. I had no idea when I gave birth to our first son that he would grow up to teach me how to fight.

This is the part of the blog where you're expecting to be inspired as I wax poetic about Braden being the spark that lit a fire in me to fight Autism and the world. Sorry. I said I was going to be honest. I said I wasn't going to be polite or politically correct.

This IS the part of the blog where I say everything I know about fighting I learned from Braden. But it's not a metaphor. I'm writing this blog with a burning in my left thigh from repeated kicks with a men's size 9 heel. My back and ribs are aching from the same foot. My son has given me an experience that I have actively avoided my entire life. I'm pretty sure this is what the day after a bar fight feels like.

I've had basic physical intervention training to defend myself in these fights. I've learned "safe" methods of restraint. I've brainstormed with professionals to create a list of de-escalation techniques. And I started out as a pacifist!

For better or worse, growing up my mom always rushed to protect me. As a young adult, my now husband was always there to save me from myself when my judgement faltered. But in this fight, there's no one.

The police cannot intervene because Braden cannot be held responsible for his actions. Social service agencies can "help" as our income and insurance coverage allows (but don't get me started on respite again). Finance is only one condition for their assistance, though.

I've been asked to tally the abuse. Can you imagine asking a battered woman how many times her partner hit her? Kicked her? Was it open-handed or closed? What was the trigger? Did you attempt to de-escalate the situation? How intense were the hits, kicks, slaps? How long would you say the incident lasted for?

There was a time where spousal abuse was ignored. People, including the authorities, looked the other way. I'm sure that still happens, but progress has been made. If my husband even once did to me what our son does regularly, he would go to jail.

But in this fight, there's no one.

Broken Glass

I told you before that the 'tism has warped our humor a bit. The truth is, mine has always been a bit twisted. My mom's second husband--the only one I still call my step-dad--is a goofy guy. I remember when I was little that he would change the lyrics to songs ala Weird Al.

But it's not just that. I love to laugh, so I'm pretty easily amused. Garret seems to have inherited my love of all things silly. We crack up together on a daily basis. Sometimes B even joins in our giggles (he has THE BEST belly laugh).

Over Memorial Day weekend, we planted our first family garden. While preparing the soil, I noticed odd bits of trash mixed in and warned Garret to dig (or play) cautiously. Among the junk were several pieces of broken glass. I mentioned to Garret that the song from the teen show "Victorious" popped into my head. He smiled, and for several days we both walked around singing the silly song titled, "Broken Glass."

One morning before school, I searched for the song on YouTube and was rewarded with many different versions. This one is our favorite because it not only talks about the broken glass "sand-uh-wich" that we love to sing about at the top of our lungs, but also includes the line, "It's fun to squeeze your mother's face."

In the middle of our streak of singing this song, Garret pointed out that it could be Braden's song since he's so good at breaking glass. Oh frustration-induced rages, how you impact us all. But anyone who has ever worked with or hung out with B knows that the biggest sign of affection he bestows is  the face squeeze. It's a little unnerving at times, since you can never be sure if he's about to squeeze you or slap you. But we know this is how he shows us love, so we tend to offer up our cheeks.

So I've decided to share our sense of humor. Here's the song, complete with lyrics. Enjoy and for heaven's sake laugh!

Goin' Commando

Early yesterday afternoon, my phone rang. My heart began to race when I heard Braden's teacher on the other end of the line. She's a pro, and she let me know immediately that there wasn't an emergency. And exhale!

Braden had a bit of a toileting accident (which is unusual, I'm blessed to say). It seems that in all of the chaos of moving, I had overlooked sending in a spare set of clothes. She was calling to let me know that they had put him in a pull-up they had on hand, and that he seemed to be tolerating it okay. I told her that I expected he would but asked if she needed me to bring a change of clothes over to the school (even though I really, really didn't want to go).

She said it was no big deal; she really just wanted to touch base so I wasn't confused or concerned when he got home. She was still dancing around something, I could tell, so I countered with, "Well, if anything changes and you need me to bring underwear or shorts, I can." She answered that if I didn't mind, if he wanted the pull-up off they could just pull the shorts back up and send him home that way.

See, sometimes this life is funny! She didn't just come right out and ask, but she wanted to be sure that I wouldn't freak out if he came home commando. And this isn't even the most awkward conversation on record about B. (Hands down that would be about him rubbing himself on tables and chairs in his 3rd grade classroom, but those issues are a whole other post).

I assured her that I was fine with that solution. Maybe because I'm lazy and didn't want to drive the 2 miles to his school. Maybe because I've learned to treasure my downtime. But the reason I gave for my permission was that whatever she sent him home in, it would be better than what I'd gotten him to wear around here all weekend.

We both had a good laugh. This stuff is real. Sometimes it's even really funny. But you have to choose to find the humor in it. That's how I get through my emotions on most days; I choose to laugh. (Though I'm also the first to admit that the special needs life has warped my sense of humor).

Survival of the Fittest: Life in the Lewis House

The holiday weekend was LONG, but we all survived! One more broken window pane, another sizable dent in the living room drywall, a broken wall clock, and a few band-aids but no major incidents. Still, if the last four days are any indicator of how my summer is going to go (and I know that it is) I'm more than a little nervous.

The paradox of raising this child is how very much I love him and how very much that doesn't matter. Okay it matters, but it ultimately doesn't change the gritty reality that is our life. No amount of love, or even passion or dedication, can change our circumstances.

He has a developmental disability that keeps him from being able to form typical emotional bonds. If it were that simple, if there was just nothing, it would be easier to take. But he hugs me. He kisses me. He laughs with me, and we sing songs together (Well, I sing and he engages in his own way).

And then the inevitable happens. I have to impose a boundary on him. No, he can't have a fourth frozen chicken patty (because at some point I have to stop the processed-food monster). No, he can't watch YouTube videos on my telephone (because I let it go that he was hitting the $300 iPhone [that I couldn't really afford the first time] on the table for 15 minutes, but he's started throwing it at the wall in between clips).

You may be reading that and thinking that I shouldn't be telling him "No." Mmmhmm...I'm actually pretty good at this parenting thing. Just as often I present the information with a positive spin: "Let's put the phone down and go swing!" in a singsong voice with a scary, big smile. I redirect. I offer positive reinforcement: "I like how you're sitting quietly! It's so nice when you leave the phone on your lap!" When all that fails, I can bribe with the best of them.

But the reality is that my son has a zero tolerance policy for the concept of no. During his first hospitalization, the attending psychiatrist told me on day 21 that they'd found Braden's baseline. She said, "If you agitate his comfort level, you get negative (aggressive) behavior." At the time, that infuriated me. 21 days to say something that basic? I realize now that she was spot on, and it's that's simple. And that complex.

Since he was two years old, we've been working on giving him coping skills to manage his emotion. All parents do that. Most just make some noticeable progress. At almost 12 years old, his go-to is still hitting, kicking, and screaming. When he was younger it was embarrassing. Frustrating. Exhausting. Now, it's all that and more.

I gave birth to someone who is abusive. To me, to his brother, to teachers and classmates. Truthfully, to anyone he can get his hands or feet on in a moment of rage. I wish that was melodrama, but it's not.

Again, the paradox of raising this child is how very much I love him and how very much that doesn't matter. I know that those amazing moments --of attachment, of joy, or what I interpret as love--are the exception and not the rule.  I understand that his confusion, his frustration, his anger are manifestations of his disability overtaking him, in those moments it's running him and clouding his already limited ability to act rationally.

But I have toe-shaped bruises all over my legs. They're kind of like polka dots: yellow, green, purple. My hands go numb on an almost daily basis as a result of karate-like chops to my upper arms. I've been hit and kicked from head to toe.

Last night I had to call my husband in to help me give him a bath. To give him a bath. Why the behavior? I was trying to wash him. To get some of the flith from a weekend of picking leaves off of plants and trees off of his hands. I could not manage giving my son a bath. He was kicking the fiberglass tub surround so hard I was afraid he'd crack it. 

Lots of people think they know about Autism. They likely don't know it like this. And I swear to you, I'm STILL being polite. I'm not telling you the whole story.

I've had professionals tell me this isn't "just ASD." Clearly this child has some co-occurring disorder. Whatever. I don't really care what it's called (although I'm pretty sure this is textbook old-school Autism). I just know that I need to call it something in an attempt to find resources. It used to be that I was searching for pathways to improvement or supports to advance his abilities. Now, I'm just looking for the resources to help us survive.

You can't make this stuff up...

As much as we would have loved to have packed up and taken advantage of the long weekend like so many families do--camping, day-tripping, etc--we've learned our lesson. I think we gave it more than an average effort. Throughout Braden's life, we've tried to make sure that he doesn't miss out on any typical childhood experiences because of Autism.

As a family, we've been camping. We've rented cabins. We've gone to the museum, the zoo, the water park, and the amusement park. We've seen baseball games and traveling musicals. We've even gone to Walt Disney World (Believe me, I know we've been very blessed to even have the opportunity to do half of these things). And while every trip has had good moments, the reality is that the stress has far outweighed the fun. (If you can really even call it that).

So when I say we've learned, I mean we've learned. With our recent move, there was no question that our finances would benefit from staying put. There's still plenty to unpack or organize. And who in the world would care for our dozen hens if we left? Even more than all of that, we're just tired. (I think that's the hardest part of the 'tism for me. The sheer exhaustion that isn't cured by naps or good nights of sleep).

Of course, rest isn't exactly what we're getting at home. We tilled up the patch that will become our family's first garden last night. And then I picked out the rocks and (damn it all!) potatoes that littered the dirt. The normal routine must also be kept, and that means late to bed and early to rise for Captain ASD.

Today I got the opportunity to spend some time with my little guy; we decided to bake applesauce cookies. So Big B played outside while Daddy did...whatever it is Daddy does outside. As I was getting ready to put the first batch of cookies in the oven, in walked B. What followed surely must only happen in ASD-land.

B grabbed a handful of fries that were left over from lunch and handed me the bottle of ketchup. As I turned to grab the bottle, I processed the scene. Braden was stark naked, dripping wet and holding the food in his hands. Blood was running down his arm.

I took the towel off my shoulder and pressed it to his arm and ushered him into the bathroom. He sat down on the toilet, the lid of which was up, while I held the towel and fumbled for the peroxide and antibiotic cream. He starts to tinkle because, hey, he's on the potty. Trying to shove a fry into his mouth, he dropped a few others onto the bathroom floor.

So I'm half-heartedly trying to tell him not to eat the floor fries (we have 3 boys living here!) and whole-heartedly trying to clean up the blood. I realize that the blood is coming from a scabbed-over mosquito bite that's been torn open, so we don't have a serious injury on our hands. I remember that the name-brand antibiotic cream is near Braden's bed because he asked for it by name the other night as he er, um, stimulated himself to sleep (ASD and puberty may prove to be a lethal combination for me, by the way). I decide he'll be fine and slap a Band-Aid on it.

Crisis averted, I suppose, but as the moment passes I can't help but feel like I'm not managing this disorder very well. The number of moments that are like this one are more frequent than you would believe. But then, my angel puts it all into perspective. Garret walks into the hallway, surveys the scene, shakes his head and says, "Oh, Braden. You gotta love him."

Ah, Garret. The completely dry, totally dressed, not bleeding child who reminds me not only that I'm not a complete failure as a mother, but also that it's all going to be okay...as long as we keep staying at home. I mean, really, do you want to spend your holiday with this unfolding at the campsite next to yours?

Admission

Each weekday morning I make coffee, pack a lunch, and send my husband off to work. I have a short break and then I wake Garret up and get him ready for school. Then I have an even shorter break before I wake Braden up (assuming he's slept through all of the above).

Today marks day four of this school year that the last step has been removed, and this is the first of those four days that I haven't retreated to my bed to avoid the change. Shortly after midnight on Tuesday, Braden was admitted to an adolescent psychiatric unit for observation and treatment. Happy Valentine's Day, right? This is his third hospitalization in four years, but it isn't any easier than the first.

His bedroom door has been closed since I got home from the hospital. I have avoided doing laundry because I can't stand the thought of folding his clothes, or worse, having a load that now doesn't have anything of his in it. It hurts so much to be in this place again that I can barely breathe. So why did I voluntarily call the police department and ride in the back of a squad car with him to the emergency room? Why did I sign consent upon release to allow him to be admitted?

11 1/2 years ago, I gave birth to a 6 lb. 7 oz. baby boy. He had a full head of dark hair, huge dark eyes, and beautiful olive skin. Over the years I have poured more of my heart and soul into him and his well-being than I'd have believed I had to give. I love him more than life.

But he is now a young man, 5'3" tall and 120 pounds. He has surging hormones and a short fuse. And the heart-wrenching reality is that those factors, when paired with his cognitive impairments, make him a danger to himself and to those around him.

It doesn't get easier for him to be away from me. No, the reality is that it gets harder. Each time I agree that I cannot handle his behaviors, therefore him, I am admitting a little more that I cannot help my baby. That I cannot in and of myself be what he needs. That the unconditional, limitless love of his mother cannot "fix" what is broken in him. Each time I make that admission, my head tells me it's not failure, but my heart...well, it breaks.