I recently watched an old episode of the A&E series, "Hoarders." That's the kind of show that you watch when you want to feel better about yourself. I can't really think of any other reason to actually sit through an episode (or three).
The woman being chronicled had become a collector of animals, specifically cats and dogs. She had over 50, and they were living in deplorable conditions. As I sat in albeit faux shock, the story continued to develop. Her 14-year old daughter was living away from home because of the unsafe and unsanitary conditions. As I listened to this woman justify why she kept these animals and assert that she was a good mother, my shock ran out.
Teeming with anger, I watched a selfish woman tell a pathetic story. I judged this woman that I'll never know based on less than 30 minutes of edited-for-tv reality. Why? Because we shared this common thread of disassociation from our respective dependent child.
Do I know that my situation is different than that woman who chose house pets over her child? Yes. Do I think I would make different choices in that situation? Yes. So why draw the comparison?
My visceral reaction to otherwise mindless television reminded my that as smooth as this transition has been, I am going through a transition. In that moment, I hated in her what I hate in myself. I hated the reminder of the emotions I'm trying to go around, rather than through.
My mind can justify the decision for B to live apart from us. In the month of January, he averaged 97 behaviors with "noticeable force behind the motion" and/or "directed at a specific person/or object" each day. 97. Every day. (That information was primarily gathered between the hours of 4 PM and 10 PM, when he wasn't in school and had one-to-one staffing recording data).
The assessments and the data are restating what we've known for years. There haven't been any moments of profound clarity or life-changing ideas to support B that we haven't considered. If anything, we are reinventing the wheel as new people learn what we have known about this precious boy.
So, even if it is only by default, my soul is at peace with the decision to seek help for B and to focus on rest, rejuvenation, and quality of life for the other members of our little family. But my heart. God have mercy, my heart is still going through this.
Most days, the ache his absence has created is dull. I see him regularly. I know he is okay. But some days, all it takes is a reality tv show--a selfish woman telling a pathetic story--to bring it all to the surface.
Saturday, February 21, 2015
Friday, November 7, 2014
Unacceptable
For the last few weeks, we've been working with Community Mental Health, their contractors, and our outpatient psychiatrist to craft an outside of the box intervention. Our primary goal is simply to allow Braden the opportunity to build skills in critical deficit areas, to learn to manage his emotions in a positive way, and to have access to intensive behavior-based therapy. For years, we have had the same goal.
I don't know if this effort will be different than the others. I've spent so much time and energy drawing attention to our situation. I've dug deep into my soul to find the strength to build a case against my son being fit for society-even though that's the opposite of what I believe to be true-because that is what decision makers are conditioned to see as actionable. I've talked and I've listened. I've reasoned and I've begged. I've been stone-faced and I've cried.
The one thing this team agrees on is that I've exhausted every traditional resource. Progress-the kind you can build a future on-has eluded my son. His demons are as squarely stationed between him and his independence as they've ever been. And that, as it has always been, is unacceptable.
Thursday, October 23, 2014
Getting Started...Again.
When someone asks me to describe myself, the word
storyteller is always included. If I had to answer in one word, that would be
the one. I feel the most like myself when I am sharing ideas with others, be it
in print or in person. I love the dance of communication.
I studied rhetoric in college. I became a consultant to help
non-profit organizations share their stories. I’m a Facebook addict, primarily
because I’m fascinated by all of your stories. I free write, I journal, and
occasionally I blog.
I’ve offered anecdotes and monologues about raising a child on
the Autism spectrum because, at times, I have needed to let some of the emotion of
that charge out of my being. Many have graciously turned those pieces into
dialogues, which has helped keep me moving forward. To date, blogging has been
like a relief valve, allowing me to modulate the pressure I have felt inside.
Over the years, our family unit has endured through good
times and really, really bad times. We have learned as much as we could about
our son’s diagnosed challenges. We’ve learned as much as we could about him—and
from him. If there is anything I am an expert in, it’s him.
No family has worked harder to adapt to a family member’s
needs than ours. Many have tried as hard. Some have had more marked success. No
family has worked harder. Loved harder.
We have exhausted every readily available option—and ourselves.
We have thought outside of the box, and we have gone to extremes. We are just getting
started.
Monday, July 9, 2012
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
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
Tuesday, June 12, 2012
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.
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.
Monday, June 4, 2012
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!
Wednesday, May 30, 2012
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).
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).
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