Autism, CBD and Complete Irony

So, this month I took a leap of faith that I never thought I would EVER take. For the past year I have been seeing that my sons anxiety and aggression were rapidly inclining. The push for medications from the professionals working on my son’s case was becoming increasingly stronger with each passing appointment.  I had tried just about every behavioral intervention out there. I tried adding more sensory items into his environment and even began to alter my schedule to provide for more “cuddle time” to allow more time to focus on holds to promote safety. I had begun to dwindle down on therapy time and even requested his therapists back up on what was expected of him in therapy with no significant improvements.

He was not attending at all to tasks in therapy and his ability to focus on any task for longer than thirty seconds was waning. He was no longer interested as evidenced by his laying down during times where he should be working in therapy. At meals when we went to restaurants he would often slouch in his seat or even lay down completely on the bench beside me with his iPad occasionally reaching up for another french fry on his plate. His yelling out was becoming louder and more often and he was losing control and I was losing hope.

I was three weeks away from an appointment that I new was going to be starting him on medications and I was dreading it. I had tried so hard to avoid medications but at this point I could see him struggling internally more and more to stay even.

I had heard a lot about CBD oil but had always dismissed the option being that I did not want to “drug my kid”. I had many friends who smoked the stuff and I was always declining and sitting that activity out. I even would tell people “that stuff is so bad for you. Im not getting arrested for that” and often i would be met with some coy rebuttal at how it is less dangerous than alcohol and the arguments would progress form there. But at this point now that it has been legalized in my home state of Michigan I had begun to see many parents using it with their kids on the spectrum and had begun seeing positive improvements in their children and so I began reading and researching. I could no longer, in good conscious, say it was not an option for us. It was either strong psychiatric medications (and i knew the effects of those) or CBD oil. And so, on a whim, I walked into the hempworx tent and looked at the product before me trying to push down all my prior views on Marijuana. As the kind woman sat in front of me talking about the many benefits of CBD I got what what I could as I battled to hold on my my wiggling 10 year old autistic son. I knew at that point I had to try. I owed it to him and to myself. I am a believer that it is up to me to “leave no rock un-turned” and I reminded myself of that as I filled that first dropper and hid the first dose deep in a cherry tomato.

That first day I noticed a difference. Many people say it could take weeks but i noticed right off. He was not screaming while we were out garage sailing. He was not trying to wrestle my phone out of my hands. We arrived home that night and my husband and I looked at one another knowing we both noticed it. We continued with the same dosage the next day, this time without hiding it in any food. Straight up.

After, about two weeks it was becoming increasingly evident that this was working. I kept stopping myself to recheck that this was in fact improvement or if i was just so hoping that it would be. But then people began to come to me saying “he is so much calmer in church” “I could see he was so much calmer when I came over today”. But it was three days ago when it was solidified.

We had an appointment with a specialist and I did not tell her he was on it. I had done this on our own accord. Now the first visit with this doctor Aiden was all over the place. he was melting down up and down the halls. He would not leave the laptop and desktop computers alone and the doctor could not get him to attend to anything. She added a diagnosis of ADHD and recommended a medication like ritalin or even an antidepressant to help with his OCD. She replied that “he is very bright but due to his distractability medication is recommended”.  But this time, this time was different.

As we walked into the foyer the nurse asked him to get on the scale, he complied even giving up the iPad. She then asked him to go to the ruler on the wall to see how tall he was and again he complied. He walked down the hallway passing computer after computer with no issues. When the doctor finally entered she began to take down the information and we began to speak as Aiden sat quietly with his iPad on the little doctors exam bed.  When it came time for her to assess Aiden she asked Aiden to turn off the iPad which he did and i gently took it from his hand and set it on the floor. He made no attempts to recover  it and as the doctor asked him questions he began to respond. I Saw the surprised look in her eye as she said, “you have done great with him mom he is like a totally different kid. I’m truly impressed”. As we ended the appointment and I read the doctors appointment notes and recommendations I began to cry. My biggest fear was starting him on psychiatric medications. Working on the unit I had grown to harness an avid fear of them as I saw what they could do to people and I had developed the belief that once they were started they were very often never stopped.

As I sat in the car reading the note I began to first let out a sigh of relief that we were not only being helped by a more natural means and then I began to laugh at the realization that among all my weed partaking friends I would be the first of them to get a medical marijuana card. While the CBD we are using is, at this point, THC I plan to try that route here in the near future as I am seeing more and more people having success with it. Moral of the story, Natural means work. Do they always? No. Do I have any regrets? Only that I didn’t try this sooner because I am now a believer that CBD gave my son his smile back.

Why I Share the Hard Moments of Autism- The Inpatient Experience

“Sue, come with us please. _____ is asking for something and we don’t know what he’s asking for” she said interrupting morning report. Knowing who she was talking about I knew why she was asking me. A nonverbal autistic man, and I had the most experience, I knew basic sign and had brought in a PECS ( Picture exchange communication system) to help him earlier in his admission (that his group home workers didnt even know how to use and later would take it with them and not return it leaving him unable to communicate once again) and everyone was asking how it worked. I couldn’t help but feel fear as I thought about my three year nonverbal child at home.

I walked into the room to find him in four point restraints and security standing by as the nurse was in the medication room drawing up some sedative to help calm him. I said verbally and in basic baby sign (because I was not sure how much he knew noting he was older in age thus was raised in a time Long before autism had the treatments they have today) “Hi man, what do you want” (signing “you want what” as the exact translation in American Sign Language) he stopped and calmed just looking at me. I tried to think of the most basic of needs and immediately, noting he was of bigger stature said, “you want eat?” While using the sign for eat. At this question his eyes lit up and he said in that familiar autism tone “wa, wa, wa” as he vigorously shook his head.

I looked at security and the other technicians in the room and said “I’ll be right back” and dashed into the units kitchen to see what I could find. I warmed up some Mac and cheese as quickly as I could and juice and a spoon and re-entered the room where security was still standing by and the nurse had re-entered the room. I asked security to release one of his hands so he could eat and security complied still silent and nervous preparing for a possible battle. I understood, this guy was big and even I was mildly unsure about about how this was going to transpire but I also knew that autism is different than other disorders and a fight was unlikely now that his need had been met. He finished the first small plate of Mac and cheese and i said “more” as i signed and he said calmer this time “ya” as he continued eating the last few bites. I ran and got another plate and brought it in  I told security that he would be okay now and looked at the nurse still holding the shot in her hand and said, “he wont be needing that shot he just needed to eat”. But the nurse said, “I have to give it to him its already drawn up”. As she gave him the shot to “relax” him I couldn’t question it. I felt a tinge of anger boiling up inside me but then I knew nothing about nursing and meds I didn’t know how all of that worked and I was not going to confront the decision in a patient room (and would never end up doing it all). I stood there while everyone began asking how i knew he was hungry. I just looked at the man in front of me enjoying his Mac and cheese and said, “I got you man. High Five!” And he high fived me back never taking his eyes off the rest of that amazing food in front of him.

Two weeks after this interaction I quit my job on the psychiatric unit. It left a lasting mark on my spirit and I knew I needed a break. I was disheartened and disenchanted to say the least. This was the first time that the reality of my sons disorder (and really all mental disorders) had hit me in a way that it hadn’t before. This was the first time that I realized that in the inpatient setting no one really knows anything about autism. This was the pivotal moment at the beginning of my journey with autism that I realized that really, I was in this alone. This was the genesis of my fears and on this day, I made the promise that no matter how dire the circumstance I would never take him to a hospital. I would never put him in a group home. If there ever came a day that he got violent I would bare it because the results of asking for help would be more painful than a few Bruises. I would not call the police, I would not enter the er. After 13 years on the psych unit now I have seen many physical altercations surely by now I should have the tools to navigate a crisis situation. No one knows my kid better than me… Right?

There is a certain unwavering anxiety that comes over you when you realize that you are not only the front line but you are also your child’s only buffer between the world that loves them and the world of the “system”.  I have no adequate words to describe to you the realities of it all. This is the side of the Autism that no one really talks about it because not many know the realities of the system that waits out there for them. I will admit to you that this is one facility and one experience but its real. I understand that every child, ever situation is different but if our clinicians are not educated how can they help our children and our families at a time when we need them to know how to help? This is why I come to you and say “stop hiding your realities. Stop not sharing your pictures of the hard moments. In doing this you are not preparing the world to help you and your child in times of crisis”. It’s great to share the positives and the triumphs. It’s WONDERFUL to see all of our children succeeding but our kids will not always be succeeding. There will be hard moments.

After two years of taking a break from the psychiatric unit I returned with a new set of eyes, an older child still nonverbal and with a lot more experience with the “tough” parts of autism. Since my return 5 years ago, I have seen only one person with autism but as i see the numbers of children increasing year by year I find it increasingly more important to talk about it. To share my experiences with the mental health community, especially the professionals because unless you talk to someone actually living it you cant know what the real struggles are. They can’t know how to help if we don’t equip them… it’s our responsibility as caregivers and advocates to help the system help us. We are a team after all.