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 alone; but we did.
Our son, at the time 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 we he is challenged by. Mood disorder-not otherwise specified (dx at age 6), Post Traumatic Stress Disorder (Dx at age 5), Generalized Anxiety disorder (where he has severe anxiety and OCD), and from birth he has had a major bowel motility problem- now called Bowel Motility disorder with cecostomy. The cecostomy 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- water, with salt and Castille soap. This is to help literally irrigate and clean his bowels every day. With this, he still needs to go to the hospital about twice per year for what we call hospital disimpaction procedure. It takes place under anesthesia, and is a surgical procedure. This is twice a year. However, it has eliminated the need for hospital clean outs, that usually required about 5 days in the hospital, NG tubes, enema’s, numerous xrays, and nothing ever going as planned. Because that is our son. Unfortunately he had to endure these hospital clean outs multiple times a year, and because nothing is every routine for our son, one year he was hospitalized 7 times. In one year. He was only 3.
Fast forward to summer of 2015. That year actually started on a high note for our son. We had seen some improvement with some of the aggressive behaviors, he in general seemed a little happier, more engaging, in a much calmer state of mind for him. 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. We do EVERYTHING we can at home to help him. We have a protocol of 300ml of magnesium citrate. We use Fleets Enema’s (thankfully this now all goes through his cecostomy site). But despite our efforts, at some point he needs hospital disimpaction. It’s just how it is for him- and always has been since he was 4 when he got the cecostomy.
It first starts out that he has less of an appetite. Then he seems to experience a lot more 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 clearly faulty valve that is supposed to prevent this from happening. Once the stool starts to move it’s 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 then he stops eating and drinking. And if we are not vigilant, he gets dehydrated, more sick, and well it gets much 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. We’ve been this route. It’s so much more involved and more traumatic for him. So we try to avoid this if possible. He has Post Traumatic Stress Disorder because of all his of hospital experiences. This makes it all even more challenging. He experiences so many triggers for his PTSD all the time. And this contributes to some of his behaviors.
You see, our son has Autism. He wasn’t diagnosed until age 6. Although he was clearly developmentally delayed in so many areas, his non functioning bowels from birth were always at the top of the list. It impacted his everyday, his health, his ability to eat, to sleep, to interact with others, to socialize, to play with toys, to engage with his environment, so many milestones. But his bowels and physical health were certainly at the forefront of his needs to be addressed. Our son was not well and clearly was in pain all the time.
But what no one was able to help us with during all this medical stuff happening 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?
We always did our best to advocate for him. Always! 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. He was so fragile in so many ways. This is our son. This has been his existence since he was born. This was all he knew - blood draws, doctors, hospitals, pink lady enema’s, 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. 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 we never gave up. We continued to fight to get answers for our son.
Fast forward 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. His anesthesiologists give us directions for pre-meds at home to keep him calm so we can safely get him there. Then once there, we call them and they come out with a wheel chair to bring him to the surgery center. This is just how it goes. We have done it this way for several years now. But unfortunately, like so much, 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 experience a lot with him and he struggles so much with so many everyday things- his system is like a newborn. He is incapable to tolerate his environment, his ability to cope with his environment, to be able to engage and function within his environment. His only environment that he sometimes feels less challenged by and still requires great effort to handle is his home environment. This still is a very difficult task for him much of the day. But this post is not about his typical everyday struggles. It’s about when they are no longer typical struggles that he is faced with, that we are faced with; it’s about when it changes, 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’s now become dangerous at times for his safety and our families safety.
He wasn’t sleeping, literally staying awake all night. He wasn’t eating. He couldn’t sit still for 2 seconds, he was angry about everything. He literally walked around the house, just pacing with no life in his eyes. He for the first time since having his cecsotomy in place was refusing to do bowel irrigation, and not just once but multiple days. 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. Everything agitated him and made him mad. Everything around him was like pins and needles to his being. Everything external to him was a trigger. And 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 knew he needed help. And more importantly, we knew we couldn’t do this alone.
This was different than any other crisis we’ve been in before. We didn’t know where to turn. With my husband needing to stay home because I alone could not manage him, both physically, emotionally and try to make the necessary phone calls to see who could help us. My husband stayed home from work for almost 2 weeks straight. 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 1000 times, and continually hearing “I’m so sorry for what your family is going through, but I’m sorry I don’t know”!
WHAT!!! 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 appt, 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 are not a staff that does medical care only psychiatric care. WHAT- are they serious! They were and worse had no suggestions of what to do. So phone calls continued, our son continued to rage out of control, none of us were sleeping, it was unimaginable what was occurring to our family and our son. Yes of course 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. That was our goal. We felt we could not transfer him safely to the ER in order to get the very necessary medical help he needed. But unfortunately, after almost 4 hours of the police being at our house, de-escalating the situation with our son, bringing in social workers and other county crisis intervention help, they felt it was not necessary to bring him to the ER (by declaring him a 51/50) and that having the behavioral health SW assist us 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, overwhelms him, which at this point is EVERYTHING! So this ended with him now having this experience of his parents calling the police for help, and not getting anywhere near that.
So exactly one week later, as our crisis situation is still continuing, things are still bad, and unmanageable, and we’re all even more tired and upset, and emotional, and bruised, in the middle of another rage meltdown we made the decision to get him to the ER. We weren’t going to call the police this time, because our experience showed us he won’t get to where he needs to be, the hospital. Our hope again was to get him to the local ER. We were always told once at the hospital it’s their job to then find a suitable place to help him. We knew the only peds psych hospital in the region wouldn’t take him. Apparently, just like we experienced, the local hospital did not know what to do with him. We were informing them of what little assistance there was for a child like ours during a crisis like this. Not what you want to be doing as a parent in crisis. They had no idea how to help him. They had no idea the lengths we had already gone to to get him the necessary help, only to find us at a dead end. You see, our son was in crisis. They saw that as, oh a child who needs help, which then means services. Because there was no way one could need be in such a crisis if you have the right supports. But this is again where the systems fail children like ours. We have supports, we have services, we have medications, we have doctors, regional centers, Behavioral services, social workers- you name it, we’ve had it or currently still do. But what about in the middle of a behavioral crisis? It happens! Despite our greatest efforts, no matter what we do what services and support we have, crises happen. But clearly we were still the most knowledgeable regarding our son, his needs, and what isn’t available during a crisis.
While still at the ER with our son, in a room set up (sort of) for mental crisis (however if there is something to be taken apart or taken down- our son would do it). They 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 while being 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.
Well, our son is verbal. However he uses scripts to communicate words. He lacks the ability to use language in a meaning way to express his needs and/or wants. He 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, happy 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 again, this Social worker who was kind and sympathetic had nothing to offer that could help us; except she said if we were over whelmed parents, they could place him in foster care!
WHAT!!!! Foster care?? Are you serious? This is just getting worse. This situation we have been in is actually getting worse! This is how they think my son will get help, by placing him in foster care? They think we are overwhelmed parents? Oh my goodness, 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 will not help our son. This does not benefit him or us. This will only make things worse, and he still won’t get 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? There are so many problems with this. But that’s for another post. Ultimately, over 7 hours later, he was now calmer and the ER physician we were working with said he could admit him over night to hold him, but felt it wouldn’t do any good. So we decided to take our son back into our car and drove home. Feeling exhausted, overwhelmed by the entire experience, and more importantly hopeless that there is nowhere for us to get him the help he needs. How can this be happening?
We had a lot of people suggest we take him to Stanford. As if you just show up on Stanford’s door step and they’ll let you in with welcoming arms and want to help. That’s not exactly how this system works. Trust me- on those hours and hours of phone calls I was placing I called “Stanford”. Which department was best to receive help from? Was it behavioral health, psychiatric health, seeing a Neurologist, Psychiatrist, someone who specializes in Autism? What? I was unsure. I tried to call them all, hoping to be pointed in some direction. Just like you don’t just show up at Stanford, you don’t just call them either. You need referrals. You need out of network approval from your insurance company. You need approval from your own medical group, which is definitely easier said than done. Things went back and forth. We spoke with so many nurse care managers. We got everyone the information they requested in order for us to get appointments. Now do you see the problem with this? This is all just for getting some appointment in the future, maybe near future if we’re lucky, but certainly not immediate. How many more WEEKS can we exist like this? What choice do we have?
You may be wondering about our “local” psychiatrist. A physician who he’s been seeing since he was 5. Unfortunately, it was summer and she was away for a time leaving an on-call doctor who didn’t know our son to assist and of course they said go to ER if he’s in crisis. How many times can we go round and round with this? We had emergency meds. We had valium- it didn’t work! Not even a little, to our surprise. He also at the time was on Clonodine which had been a fairly effective medicine for him. In fact probably one of the only meds that actually helped him where we noticed a difference over the years. We also knew we could use a higher dose of Clonodine as a rescue med. Again, it’s been effective in the past. In fact, this is the med we have always used as a pre-med when he needed to go to the hospital. But not this time. Nothing was working. Nothing was effective. We had run out of tools in our known tool bag. And believe me we had a pretty full tool bag when it comes to our son. We’ve had to. And now, it’s empty. And we are out of ideas. And unfortunately, so were the professionals. How can this be happening to our son? Our Family?
It’s now the end of the summer in August. We’ve spent the entire summer in a haze of behavioral crisis. And unfortunately, our son never received the proper help and support. Our family never received the proper help and support. Time just passed. That was it. 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 the help they need. We have resources, we have insurance, we have a team of professionals, and still my 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. Our son. No one was treating him as a whole child with multiple issues. He was treated more like a puzzle, with each specialist treating their area of expertise. Our son struggles. But he should never have had to struggle the way he did last summer. There should have been help available to us. But unfortunately, we never found it during this crisis.
