by Jill Escher

Okay, let me be honest. The first time I met Rupert Isaacson, which was last year at the fabulous Square Peg Ranch in Half Moon Bay, our discussion quickly turned to the subject of sex. Well, not in that way, but to the issue of our autistic children and how to acknowledge and safely facilitate their sexual lives. It was my duty as an autism mom, he said, to give this topic very serious thought. Looking into his blue eyes, I was pretty much, "Like, uh-huh, whatever you say... sex surrogates are legal in Amsterdam, I'm on it...."

That's the kind of guy Rupert is. He's a bit spellbinding, and does not restrain his thinking for the sake of niceness or political correctness. While overwhelmingly affectionate toward those with special needs, he is not squeamish about the messiness of autism or the thousands of challenges it brings. He's a hyperenergetic, intelligent, accomplished, out-of-the-box thinker, but also a prolific doer and a damn great writer. When you meet you let's hope you are infused with just a bit of his positive vibe, you will not need a B12 shot for a year. It's not just his autism-dad-heartthrob status, it's the wild chutzpah he has about his life and his approach to raising his autistic son, Rowan.

Rupert was an acclaimed journalist and activist even before he gained fame as author of the "Horse Boy," which was made into a beautiful documentary film of the same name. The book chronicled the family's journey to Mongolia to seek transformation for Rowan through ancient shamanic practices. We in the autism world have been trained to think learning and improvement can only happen through licensed professionals in fairly clinical settings but Rupert's narrative shows us that the entire world has hidden treasures that can touch our children deeply. I am usually an uptight science geek about all things autism ("show me the evidence" is my middle name), but I must admit to recognizing our special kids often make connections and growth in unexpected ways. And sometimes intuition and exploration, and not science, must be our guide.

Rupert now runs the Horse Boy Foundation, a program based in Texas that helps children build communication and learning through horses, physical play and the environment. And he's also published a new book, The Long Ride Home, which takes Rowan, with continuing travel gusto, to healers in Namibia, Australia's rainforests, and the Navajo Reservation. As a confirmed armchair traveler and autism story nut, I am grateful for this book. Lacking time for an in-depth review let me simply say the Epilogue contains some of the most beautiful prose I have ever read about the nature of autism and about the vital need for interconnectedness and community to support those affected. If nothing else, just skip to the end.

I was honored to be asked to introduce Rupert at a Los Altos event last week sponsored by Square Peg. I got a bit distracted by the wanderings of my daughter Sophie, who is 10 and has autism. Rupert could not restrain himself and did his best to engage with her as she wandered down the street, somehow involving a large American flag in the process. It may not sound like much but there are precious few autism dads I know who unashamedly Work It like he does.

Should you read the book? Yes, somehow, somewhere you will find inspiration about new activities or adventures you can try with your own child. Some parents have a hard time even making it to the park, or going for a walk, or to the beach, much less Africa, Australia, or the southwest. Maybe this book will open your horizons and enrich your life with your special child. Give it spin.

Hello Bay Area autism families!

Autism Society of America's annual conference is taking place in just two weeks in New Orleans, LA, July 13-16, 2016. It's not too late to register. Some highlights:

• Keynotes by John Donvan and Caren Zucker, authors of In a Different Key, Alycia Halladay, PhD of Autism Science Foundation, Jim Ball, and Steve Silberman

• More than 40 other breakout sessions

• SFASA president Jill Escher, who is an autism research philanthropist with the Escher Fund for Autism, will present on Thursday on "The Importance of Citizen Science in Advancing Autism Research."

Register here: http://www.autism-society.org/get-involved/conference/registration/

By Pam Raymond

California’s day programs for adults with autism are underfunded and overcrowded. But with thousands of young people with developmental delays or disabilities about to reach the age at which they can no longer attend a public school, the problem is soon going to get much, much worse.

My daughter’s story is just one example of the limited options available for these young adults and the parents who care for them.

When Briana’s special education school abruptly closed in the fall, I was faced with the premature task of finding her a placement in an adult day program. Because she is just turning twenty-one, she would only have one more year of special education services under the IDEA act of 1990, which assures a free and appropriate public education to disabled students to age twenty-two. I had not heard great things about the options out there, primarily because my daughter has a severe form of autism that requires a high staff-to-student ratio just to keep her safe and on task.

Several months prior to this I had gotten a small head start by touring a residential and adult day program, in a bucolic setting among redwoods, hills and the quaint downtown streets of Marin County. The feeling I got upon walking through the door was happiness and inclusion. A music session was winding down and most participants were engaged. Several art classes were also going on concurrently, and that was just the beginning. A textile art center was abuzz with about 30 individuals busy at their looms, while another group was outdoors doing grounds work on the nearby garden. There was a residential hall and six group homes scattered about in neighboring towns where most of the clients reside. OK, I thought, this is a program I could see my Briana in. How do I sign her up?

Not so easy. There is not even a “waiting list” per se, and they really want to have clients that are more independent. Briana still needs help sometimes in the bathroom, and she needs a pair of eyeballs on her at all times due to her eloping and wandering tendencies. There really was no space for someone with such great needs.

So what else was out there? I began the search again, this time out of urgency due to Briana’s impending loss of school placement. Our social worker at the regional center, a state-funded agency that serves people with disabilities, loosely explained the structure of existing programs. There are behavioral programs in which staff members are trained to deal with severe behaviors, such as wandering, self-injury, aggression, and toileting needs. The staff-to-client ratios in these behavioral programs start at 1:3 – one staff person for every three clients — and if need be can be moved up to 1:2 and even 1:1. In other words clients first have to try the 1:3 and fail, 1:2 and fail to get a 1:1. Instead of just asking for the 1:1 to begin with. The program I saw in Marin was non-behavioral, so the ratio is more like 1:6.

My daughter’s social worker set up more tours and I dutifully went to each one. The first one, another non-behavioral program, was quite the opposite of the Marin program. I saw 50-plus clients crowded into two run-down rooms, many in wheelchairs parked in front of a big-screen television. It was noisy and chaotic. There were some smiles, but I didn’t picture Briana there at all.

I asked the director how often the participants/clients got to go out in the community, and he said once a week, and with special arrangements by parents if you wanted activities like swimming. I couldn’t wait to get out of there, but the following two programs, which were behavioral, were not much better. They had greater staff-to-client ratio, but the clients almost never leave the building. One had a few “time out” rooms, what they described as one-to-one situations, and there was no outdoor space to utilize or enjoy.
Briana is outdoorsy, energetic, enthusiastic and for the most part happy. She has her down days just like all of us, but I want her to access the most the community has to offer. I was overwhelmed by a sense of sadness that felt like an open wound for weeks, even months later.

These programs, with some exceptions like the well-established one in Marin, are buckling under current conditions, and they are only going to get worse with the increasing number of adults like my daughter about to age out of the school setting.

The demand is leading some new programs to open up, but they are faced with trying to operate a business without failing. This usually means sub-optimal buildings leased out, or no building at all, and paying low wages to their staff.

The ratios of staff members to clients are controlled by reimbursement rates by the regional centers. The regional centers receive funding from the state Department of Developmental Services. The pay rates of some of these professionals are on par with what caregivers are paid, which is close to minimum wage.

We pay the baristas that serve us our coffee or our pet-sitters more than we pay those important, compassionate people that care for our loved ones. Are we ok with this?

Time is needed to find a good day program for a disabled young adult because there are not enough options. The New York Times reports that 200,000 children with developmental delays will turn 21 or 22 in the next five years nationwide, overwhelming a system that is already inadequate for the current numbers. Legislative leaders need to know how bad the problem already is so that plans can be set forth to avoid this looming public crisis.
_______________________________
Pam Raymond is the mother of a developmentally delayed young woman who just turned twenty-one. Pam is a graduate of Project Leadership Training with Family Voices of California.

This commentary first appeared in the California Health Report June 10, 2016. We thank the author for her permission to reprint it here.

By Jennifer Abbanat

Like so many families with children who have autism and struggle with aggressive behaviors, our experience last summer was one that no parent should ever have to face.

Our son had just turned 11. He is a very complicated child, both psychologically and medically. He has autism with ADHD. But that is one of many acronyms that he is challenged by: mood disorder-not otherwise specified; PTSD, generalized anxiety disorder (where he has severe anxiety and OCD), and from birth he has had a bowel motility disorder with cecostomy (placed at age 4 1/2).

Let me tell you about the cecostomy. It is a Mic-key button, typically used for feeding tubes, but placed just below his cecum of his large intestines for bowel irrigations that have to be done every night. It is an external device, that is just like a button that we attach a gravity feeding bag that is filled with 750ml of a solution we make ourselves with water, salt and Castille soap. This literally irrigates and cleans his bowels every day. We do everything we can at home to help him with his bowels, including a protocol of 300ml of magnesium citrate and Fleets enemas. But despite our efforts, about twice per year he needs a hospital surgical disimpaction procedure under anesthesia. This has however eliminated the need for clean outs that usually required about five days in the hospital with NG tubes, enemas, and numerous x-rays. Nothing ever going as planned. That is how things usually go for our son. When he was three, he was hospitalized seven times for procedures.

Fast forward to summer of 2015. The year started on a high note.  We had seen some improvement with his aggressive behaviors. He seemed a little happier, more engaging, in a much calmer state of mind. Our lives are always a roller coaster of emotions and behaviors, but this particular period of time, we were enjoying just a few moments of things seeming to be a bit calmer. Not easy, just calmer.

But as usual, at some point, our son starts to get impacted with stool, despite his nightly irrigations. It first starts with decreased appetite. Then reflux that we can actually hear him swallowing back down. You see, where he gets “backed up” is right at the top of his large intestines, and so many times it moves into the small intestines, through a faulty valve that is supposed to prevent this from happening. Once the stool starts to move its way up into the small intestines— that’s when things get bad. It makes him very nauseous. He is unable to keep food or liquids down, so he vomits a lot. He even just vomits his gastric juices that come up with his reflux. It’s a horrible cycle for him. So he stops eating and drinking. And if we are not vigilant, he gets dehydrated, sicker, and his condition gets worse.

Our goal is to always get him into the surgeon before it gets that bad. However, it’s not always possible. So sometimes he has to endure all of this for several days to a week. Of course, depending on how bad it is and how miserable he is, we’ll go to the ER. But this is usually a very lengthy process to start this way; requiring admittance, and then getting on surgery schedule, and then discharge. This is much longer than the usual day procedure that is more tolerable for him. He has PTSD from all his hospital experiences, which makes it all the more challenging. He experiences so many triggers for his PTSD all the time. And this contributes to some of his behaviors.

Our son's autism was diagnosed at age 6. He was clearly developmentally delayed in so many areas, but that was overshadowed by his non functioning bowels from birth. His struggles were evident from so early on, and no one would listen to us. We were dismissed so much as parents, it still makes me angry.

But what no one was able to help us with during all the medical trauma was what it was doing to him emotionally, psychologically, mentally. He simply disappeared. He shut down. He was like a skeleton just staring at me, with his eyes begging me to help him and take it all away. It’s an indescribable feeling when you see so much emptiness in your child. As his parents we were helpless. We knew he needed all this medical attention. It’s critical for his existence. But what is it all doing to him as a little boy? This was all he knew — blood draws, doctors, hospitals, pink lady enemas, machines beeping, strangers touching him, poking his belly, people talking, funny lights, blood pressure cuffs, more funny beeping machines, smells (oh the smells).

He has autism and severe sensory processing disorder. Can you imagine what this must have all been like for him? I can’t. Except to say it made his existence even more hell for him. We always did our best to advocate for him. Even if it meant jumping through more hoops or making others angry because they disagreed (and thought they knew best). But we learned a long time ago, we know our son. Now back to May 2015. He needed hospital disimpaction. We’ve done this before. We have everyone at the Children’s Hospital Surgery Center on board (they know us very well there- they have literally seen our boy grow up). We have Gretchen, our son’s beautiful and amazing CCI Service Dog that comes with him to the hospital. We have to pre-medicate him at home (because we can’t get him to the hospital any longer safely). He is too big and strong now for us to safely transport him in the car. Then once there, we call them and they come out with a wheel chair to bring him to the surgery center.

This time there were complications. After the procedure, they needed to admit him. He had fluid in his lungs and now had pneumonia. His O2 was low and needed to be on oxygen while they gave him IV antibiotics. Never routine. This was the start of our crisis of 2015. This was the start of a period of time for our son and our family that once again put us into a place no parents should ever have to go. Our son couldn’t manage. He couldn’t function. He became unmanageable like we’ve never experienced. And believe me we experienced a lot.

This post is not about his typical everyday struggles. It’s about when they are no longer typical struggles, when it becomes greater than what we can help him with. When it overtakes everything and he is spiraling out of control like we’ve never seen before. It has now become dangerous at times for his safety and our family's safety.

He wasn’t sleeping, literally staying awake all night. He wasn’t eating. He couldn’t sit still for two seconds, he was angry about everything. He literally walked around the house, just pacing with no life in his eyes. For the first time since having his cecsotomy,  he was refusing to do bowel irrigation. He was verbally aggressive,  he was constantly bombarding his sisters beyond his usual behavior towards them. He was aggressive over everything towards us. Everything bothered him. Who knows what was happening on the inside, because he doesn’t have the language skills necessary to communicate it. It was the worst time in our lives. It was the hardest thing as his parents to see him struggle like this.

We didn’t know where to turn. My husband stayed home from work because I alone could not manage him, both physically and emotionally. We tried to make the necessary phone calls to see who could help us. I spent countless hours on the phone trying to get information, getting necessary paperwork from this doctor or that doctor, re-telling our situation and story what seemed like 1,000 times, and continually hearing, “I’m so sorry for what your family is going through, but I’m sorry I don’t know."

No one knew how to help us. Is my child so unique that no one has ever experienced a child who is in a behavioral crisis and has medical needs? How is this possible? But it was true! We were passed there, given this phone number, told to call this agency, told to wait, told to get this doctor appointment, told so many things that never got us anywhere.

You see, our local pediatric psych hospital wasn’t equipped (nor willing to) accept our son during this behavioral crisis because he has a cecostomy. They do not have  staff that does medical care, only psychiatric care. They had no suggestions.

Our son continued to rage out of control. We were always told to call 911 if necessary, but we also knew this was a band aid to our bigger problem. Where would they take him? If the local pediatric psych hospital couldn’t help him, who could? But ultimately, we got to that point as parents, where even without answers or possible solutions, we had to call 911 on our son. It was the worst moment ever as his parents. He’s only 11.

I won’t go into details about how pretty amazing the police were. They really wanted to help us and him, and really took our cues on the best way to de-escalate the situation without making things worse. Our goal, when we called 911 was for them to help us transport him to the ER. But unfortunately, after almost four hours of the police at our house, they felt it was not necessary to bring him to the ER by declaring him a 51/50, and that having the behavioral health social worker was sufficient. It wasn’t. We knew with time he would calm down. This is the pattern. But it’s temporary until the next thing upsets him, bothers him, frustrates him, or overwhelms him; which at this point is everything.

A week later, our crisis situation was still continuing with more rages and meltdowns and we took him to the ER. They had no idea how to help him. It was only a dead end. The system is failing children and families like ours. We have medications, doctors, regional centers, behavioral services, social workers; but nowhere to go for a person with autism in the midst of a severe behavioral crisis.

The ER probably never had someone begin to take apart the bed—one screw at a time. But this is what he did. Which of course gave him something in hand he could throw. So even in the ER, he wasn’t calmer, he was now more agitated and wanting to go home, and continued to take it out on us. We were told they would do a psychiatric assessment. Guess what that means? Not what we thought— it’s a social worker who comes and talks to us and to him.

Our son lacks the ability to use language in a meaningful way to express his needs and/or wants, but he has scripts and is very smart in particular subjects. He talks more like an encyclopedia. Facts, information, data— never a feeling, an emotion, pain, discomfort, anger, sadness, joy, happiness or anything that can help us and indicate what he is experiencing. The only thing we have to go by to understand him is his behavior. As you can imagine, this is very complicated and difficult.

But clearly his behavior during this crisis is telling us something and we didn’t know what. So this social worker, who was kind and sympathetic, had nothing to offer that could help us; except she said that if we were overwhelmed parents, they could place him in foster care!

What? Foster care?! Are you serious? This was getting worse. I could feel the steam coming out of my ears. I cried, I wept, I couldn’t believe this was the option put before us.  This would not get him the proper help! He is our son and we just want him to get the professional support he needs. We don’t want to give him away! Is this really how our systems are set up- instead of actually helping families such as ours, it’s only set up to take your child away? We were exhausted, overwhelmed and hopeless that there is nowhere to get him the help he needs.

How many more weeks can we exist like this? Not even meds were working, We had run out of tools in our known tool bag. We spent the entire summer in a haze of behavioral crisis. And unfortunately, our son never received proper help and support. Time just passed. But for almost 10 weeks, our family lived a crisis that never should have lasted 10 weeks.

No child should have to suffer for such an extensive period of time without getting help. We have resources, we have insurance, we have a team of professionals, and still our son has fallen through the cracks of the system. Why? Because, as we were continually told, he’s complicated. The situation is complicated. His autism, his mental health, along with his cecostomy and medical issues, only have caused him to be treated by each of the separate specialists that he requires, never piecing him together as a child, a whole being. He was treated more like a puzzle, with each specialist treating their area of expertise.

Our son and our family struggle. But we should never have had to struggle the way we did last summer. We saw there is no real help for autism families in crisis.

Jennifer Abbanat is the mother of three and lives in Davis, California.